More on when push comes to shove
One of the drawbacks of writing quickly is that you sometimes think of things later that you wanted to say -- so here goes.
The Canada Health Act has "accessibility" as one of its key principles. The concept of accessibility is glossed to include "without discrimination on the basis of age, health status or financial circumstances." But the Hamilton Health Sciences protocol certainly contains a criterion based on age, may contain one based on health status and also includes criteria related to ocuupation or role. Does this mean that the criteria are contrary to the Canada Health Act?
Thursday, September 24, 2009
Tuesday, September 22, 2009
When push comes to shove, ethical decision-making and the last ventilator...
We seem to be stuck in a bit of a rut discussing pandemic planning issues at the moment, but the issues are pressing and they warrant discussion and debate. Hamilton Health Sciences (in Hamilton Ontario) has just published its triage guidelines which will come into effect if the hospital gets overwhelmed by patients seeking critical care beds – or ventilators, when the supply of such resources is grossly inadequate to meet the demand. (The complete protocol is published in the September issue of “Health Care Quarterly” a short op-ed piece appeared in the Globe and Mail, Sept 21st) The initial stages of triage are relatively unproblematic; a team of experts will assess the patient’s clinical condition and his or her prospects for survival. So far so good, that the patient is likely to benefit has to be the first criterion for access to any treatment. The elements of that assessment include: “1) Does the patient need critical care? 3) Is more than one organ system affected? 4) Does the patient improve with critical care?” (Globe and Mail Sept 21st numbering added) These are the easy criteria, but let us pause for a moment to look at the elements in turn.
The first stages of triage
1) Does the patient need critical care?
This is completely uncontroversial; patients should not be in critical care if they do not need it (and this is as true outside of a pandemic as it is within one.)
2) Does the patient have underlying illnesses that predict a poor outcome?
Taken one way this is also uncontroversial. For instance, if the patient has an underlying disease process that will imminently kill the patient regardless of the success of the treatment for the flu and its aftermath, then treating the flu is futile. (For more on futility see the post June 4th below.) If the patient’s underlying condition means that the flu treatment is unlikely to be successful then again the treatment is very likely to be futile. However, what happens if the patient’s underlying condition is such that he or she will always be bed-bound or ventilator dependent? What happens if, even if the flu treatment is successful, the patient will survive only to a “poor” quality of life? Is this a “poor outcome” from the perspective of the triage decision-maker? The general point here is that it is all too easy for social (or value) type criteria to slip in under the guise of medical or clinical criteria. If question 2 above is a medical question – there is no ethical problem in having the medical experts answer it. But if it is a disguised value-criterion then it warrants clear discussion as to just what is meant by “poor outcome.”
3) Is more than one organ system affected?
It is not clear how this is not an alternative way of asking question 2.
4) Does the patient improve with critical care?
This seems to be a criterion that kicks in only after the patient has been admitted to critical care, or has been granted access to a ventilator. It really concerns when a patient should be removed from critical care (or a ventilator) in favour of someone who could benefit more (or is more likely to benefit.) Again the issue is more general than merely the pandemic situation. When, and how do we decide that continued treatment is pointless (or futile) how do we decide that enough is enough? But here is where the emergency pressures of a pandemic situation kick in. Is the decision that we have tried enough, that the treatment is not working, independent of the pressure to use that ventilator, or critical care bed for someone else? Usually we want to say that medical decisions about treatment for this patient – are made on the basis of this patient’s needs not on the basis of someone else’s needs. Another way of putting this is to say that I want my physician at my bedside to make decisions for my benefit, not for anyone else’s. For example, I do not want my physician to make a decision to deny me access to a treatment from which I might benefit because someone else might benefit more. (This issue is part of a larger discussion too. Just as we often blur medical decisions with value decisions so too we often blur medical decisions with resource reasons. We do, clearly, and not just in a pandemic, need to allocate scarce resources in the most effective means possible. But the general decisions about what treatments should be made available, and the general criteria for access to this service or that, are not simply medical decisions but rather involve social determinants and what we, as a society are willing to pay for.) It is not clear from the criteria as listed whether health care workers are being charged with taking into account, as they decide for patient X, patients Y and Z who might be able to benefit more.
So much for the easy triage decisions....
What happens when “there are many very sick patients who have a good chance of survival but not enough critical care beds or ventilators?”
Hamilton Health Sciences proposes a set of additional criteria:
1) Does the patient belong to a profession that could help save/care for others?
2) Is it likely that the patient became exposed to influenza through their professional duties?
3) Is the patient pregnant or a caregiver for dependents (children under 18, disabled adults or elders)
4) Is there any evidence that the person is significantly more likely to survive than others?
5) Is the patient significantly younger than the others, thus at risk of losing more years of life?
(Globe and Mail Sept 21st)
These criteria introduce elements that are clearly not merely, or indeed, not even, medical. As such they require a far broader discussion, understanding and agreement than expert technical criteria.
Let’s look at them in turn:
1) Does the patient belong to a profession that could help save/care for others?
I wonder what reaction comes to your mind first. On the one hand this looks like a good idea. Just as in a battlefield triage situation you would patch up the fighters first so that they could continue to fight, doesn’t it make sense to keep the carers going so that they can continue to care? But I know that the cynics amongst you will ask – who made these criteria up – surely the very health care professionals who now find themselves at the head of the queue. And what do we mean by “health care professionals?” Front-line staff, nurses, and physicians would clearly be there, but what about administrative staff? What about the managers charged with leading organizations and the community through the tough decisions required in a pandemic? And what about “professionals?” Front line “professionals” cannot do their work without the support of housekeeping, dietary services and so on would people working in these roles be given priority access too?
What do you think? Would you accept this criterion as a fair and just way of allocating a scarce resource? Who would you include in this priority professional list? (Your local MP?) Does it matter that you are (or are not) a member of the health care professions (industry)?
2) Is it likely that the patient became exposed to influenza through their professional duties?
This one is interesting because it looks not to the future (to benefits that might accrue by saving this person rather than that) but instead it looks to the past. It recognises that we, as a community, expect more things from some groups rather than others and, as such, we ought to compensate those people for the additional burdens they carry. Because it looks to the past it has a completely different grounding from moral reasons that look to the future. Most of the criteria used in triage decision-making are forward looking (“consequentialist” in the ethics jargon) they seek to maximise the good by doing those things that are most likely to have the best outcomes – that are most likely to bring about the most good.) This criterion looks back, in effect recognising an obligation to those we ask the most from. It is entirely possible that in following this principle we could, in any particular case make a decision that has worse consequences than an alternative. This type of backward looking reason is unmoved by consequences.
We could take this type of backward looking reason a step further. What happens if there is a programme of vaccination for, for example, health care workers that is encouraged but not mandatory. (See the post Sept 22nd below.) Let’s say you chose not to be vaccinated and you contracted influenza, probably as a result of your close professional contact with a high-risk group. You now need a ventilator. You meet the criterion above – but you chose not to accept a vaccination that could have been useful. Should you have access to the ventilator?
What do you think? Is this a good criterion? Who should it apply to? Should it apply to people who chose not to be vaccinated? What do you think – in general, of introducing backward looking criteria in health care decisions?
3) Is the patient pregnant or a caregiver for dependents (children under 18, disabled adults or elders)
This is another version of the social usefulness criterion that we saw in number 1. In a situation where many require care we should focus our attention on those that provide the care, so that they can return as quickly as possible to their roles as caregivers. But why is providing care to others the principal social role that needs protecting. Wouldn’t we, in a pandemic with the sorts of effects we are dreaming in our nightmares, need police to keep order in the streets, security guards to protect hospitals and stocks of Tamiflu, truck drivers to deliver supplies, funeral directors, morticians and gravediggers, administrators and managers and politicians to make the priority decisions we need to keep things functioning – and on and on and on (oh and ethicists of course to ask the difficult questions.)
Again, what do you think? Are there some occupations or roles that are more important than others in a pandemic situation? If so, what are they and should members of those professions be pushed to the head of the queue?
4) Is there any evidence that the person is significantly more likely to survive than others?
This one seems strangely out of place in this list as it seems to be just an extension of the medical criteria we saw in the first set of triage criteria. But it does take things an interesting step further. Typically we make medical decisions on the basis of need. The first criterion is that the person needs, and could benefit from access to critical care or a ventilator. This ups the ante – now it concerns people who are most likely to benefit. Who would these people be? We don’t know yet, of course, but we can make some educated guesses. In a novel flu strain there may be some benefits to having been exposed to other strains of flu. That is more likely to be the case for people who are older rather than the young. And amongst that older group there would be benefits to being generally healthy. So, as a group it could be the case that older otherwise healthy people would be more likely to survive than others.
So again, what do you think? This is a return to a consequentialist style approach – we are seeking to maximise the good and we do that by treating those most likely to survive.
5) Is the patient significantly younger than the others, thus at risk of losing more years of life?
This again, is a consequentialist form of reasoning. If you save a young person’s life rather than an older person’s you are likely to get a better return, at least in terms of years lived, from the young person who may live a long time, over the older person who has fewer years to live. But is more necessarily better? Is it better to try to save the young delinquent, drug-abusing teenager, over the older, at-the-peak-of-her-career, cancer researcher? Again, what seems straightforward and uncontroversial – a prejudice in favour of the young, seems far more difficult to defend on second reflection.
Conclusions
We are exploring new and dangerous territory. The stated objectives of proposing these triage criteria is to remove the decision from the idiosyncratic whim of an individual triage officer and share the decision amongst a group that in turn can ground the decision in a set of principles. These are important objectives. And, the criteria that are proposed have some common sense behind them – isn’t it a good idea to do the most good that we can – and don’t we, as a community, owe something to those who provide care on our behalf. But, we give up a great deal as we travel in that direction. We pride ourselves on our values of equality and diversity. We do not believe that any one is intrinsically more worthy of social benefit than anyone else, and we celebrate diversity of values and difference in ways of life. In Canadian health care that is put into practice through equality of access and care based on need. If you need the service, and it is available you will be put on a waiting list (which, in effect is a way of fairly distributing a scarce resource through random allocation.) Access to the service does not depend on who you are, ability to pay, or your job or role, or even why or how you contracted the disease in the first place. Should we abandon those principles in the emergency of a pandemic? If we do abandon them we may well achieve a greater good for the community, but at what price to the values that made that community what it is in the first place?
As always I would welcome you comments.
We seem to be stuck in a bit of a rut discussing pandemic planning issues at the moment, but the issues are pressing and they warrant discussion and debate. Hamilton Health Sciences (in Hamilton Ontario) has just published its triage guidelines which will come into effect if the hospital gets overwhelmed by patients seeking critical care beds – or ventilators, when the supply of such resources is grossly inadequate to meet the demand. (The complete protocol is published in the September issue of “Health Care Quarterly” a short op-ed piece appeared in the Globe and Mail, Sept 21st) The initial stages of triage are relatively unproblematic; a team of experts will assess the patient’s clinical condition and his or her prospects for survival. So far so good, that the patient is likely to benefit has to be the first criterion for access to any treatment. The elements of that assessment include: “1) Does the patient need critical care? 3) Is more than one organ system affected? 4) Does the patient improve with critical care?” (Globe and Mail Sept 21st numbering added) These are the easy criteria, but let us pause for a moment to look at the elements in turn.
The first stages of triage
1) Does the patient need critical care?
This is completely uncontroversial; patients should not be in critical care if they do not need it (and this is as true outside of a pandemic as it is within one.)
2) Does the patient have underlying illnesses that predict a poor outcome?
Taken one way this is also uncontroversial. For instance, if the patient has an underlying disease process that will imminently kill the patient regardless of the success of the treatment for the flu and its aftermath, then treating the flu is futile. (For more on futility see the post June 4th below.) If the patient’s underlying condition means that the flu treatment is unlikely to be successful then again the treatment is very likely to be futile. However, what happens if the patient’s underlying condition is such that he or she will always be bed-bound or ventilator dependent? What happens if, even if the flu treatment is successful, the patient will survive only to a “poor” quality of life? Is this a “poor outcome” from the perspective of the triage decision-maker? The general point here is that it is all too easy for social (or value) type criteria to slip in under the guise of medical or clinical criteria. If question 2 above is a medical question – there is no ethical problem in having the medical experts answer it. But if it is a disguised value-criterion then it warrants clear discussion as to just what is meant by “poor outcome.”
3) Is more than one organ system affected?
It is not clear how this is not an alternative way of asking question 2.
4) Does the patient improve with critical care?
This seems to be a criterion that kicks in only after the patient has been admitted to critical care, or has been granted access to a ventilator. It really concerns when a patient should be removed from critical care (or a ventilator) in favour of someone who could benefit more (or is more likely to benefit.) Again the issue is more general than merely the pandemic situation. When, and how do we decide that continued treatment is pointless (or futile) how do we decide that enough is enough? But here is where the emergency pressures of a pandemic situation kick in. Is the decision that we have tried enough, that the treatment is not working, independent of the pressure to use that ventilator, or critical care bed for someone else? Usually we want to say that medical decisions about treatment for this patient – are made on the basis of this patient’s needs not on the basis of someone else’s needs. Another way of putting this is to say that I want my physician at my bedside to make decisions for my benefit, not for anyone else’s. For example, I do not want my physician to make a decision to deny me access to a treatment from which I might benefit because someone else might benefit more. (This issue is part of a larger discussion too. Just as we often blur medical decisions with value decisions so too we often blur medical decisions with resource reasons. We do, clearly, and not just in a pandemic, need to allocate scarce resources in the most effective means possible. But the general decisions about what treatments should be made available, and the general criteria for access to this service or that, are not simply medical decisions but rather involve social determinants and what we, as a society are willing to pay for.) It is not clear from the criteria as listed whether health care workers are being charged with taking into account, as they decide for patient X, patients Y and Z who might be able to benefit more.
So much for the easy triage decisions....
What happens when “there are many very sick patients who have a good chance of survival but not enough critical care beds or ventilators?”
Hamilton Health Sciences proposes a set of additional criteria:
1) Does the patient belong to a profession that could help save/care for others?
2) Is it likely that the patient became exposed to influenza through their professional duties?
3) Is the patient pregnant or a caregiver for dependents (children under 18, disabled adults or elders)
4) Is there any evidence that the person is significantly more likely to survive than others?
5) Is the patient significantly younger than the others, thus at risk of losing more years of life?
(Globe and Mail Sept 21st)
These criteria introduce elements that are clearly not merely, or indeed, not even, medical. As such they require a far broader discussion, understanding and agreement than expert technical criteria.
Let’s look at them in turn:
1) Does the patient belong to a profession that could help save/care for others?
I wonder what reaction comes to your mind first. On the one hand this looks like a good idea. Just as in a battlefield triage situation you would patch up the fighters first so that they could continue to fight, doesn’t it make sense to keep the carers going so that they can continue to care? But I know that the cynics amongst you will ask – who made these criteria up – surely the very health care professionals who now find themselves at the head of the queue. And what do we mean by “health care professionals?” Front-line staff, nurses, and physicians would clearly be there, but what about administrative staff? What about the managers charged with leading organizations and the community through the tough decisions required in a pandemic? And what about “professionals?” Front line “professionals” cannot do their work without the support of housekeeping, dietary services and so on would people working in these roles be given priority access too?
What do you think? Would you accept this criterion as a fair and just way of allocating a scarce resource? Who would you include in this priority professional list? (Your local MP?) Does it matter that you are (or are not) a member of the health care professions (industry)?
2) Is it likely that the patient became exposed to influenza through their professional duties?
This one is interesting because it looks not to the future (to benefits that might accrue by saving this person rather than that) but instead it looks to the past. It recognises that we, as a community, expect more things from some groups rather than others and, as such, we ought to compensate those people for the additional burdens they carry. Because it looks to the past it has a completely different grounding from moral reasons that look to the future. Most of the criteria used in triage decision-making are forward looking (“consequentialist” in the ethics jargon) they seek to maximise the good by doing those things that are most likely to have the best outcomes – that are most likely to bring about the most good.) This criterion looks back, in effect recognising an obligation to those we ask the most from. It is entirely possible that in following this principle we could, in any particular case make a decision that has worse consequences than an alternative. This type of backward looking reason is unmoved by consequences.
We could take this type of backward looking reason a step further. What happens if there is a programme of vaccination for, for example, health care workers that is encouraged but not mandatory. (See the post Sept 22nd below.) Let’s say you chose not to be vaccinated and you contracted influenza, probably as a result of your close professional contact with a high-risk group. You now need a ventilator. You meet the criterion above – but you chose not to accept a vaccination that could have been useful. Should you have access to the ventilator?
What do you think? Is this a good criterion? Who should it apply to? Should it apply to people who chose not to be vaccinated? What do you think – in general, of introducing backward looking criteria in health care decisions?
3) Is the patient pregnant or a caregiver for dependents (children under 18, disabled adults or elders)
This is another version of the social usefulness criterion that we saw in number 1. In a situation where many require care we should focus our attention on those that provide the care, so that they can return as quickly as possible to their roles as caregivers. But why is providing care to others the principal social role that needs protecting. Wouldn’t we, in a pandemic with the sorts of effects we are dreaming in our nightmares, need police to keep order in the streets, security guards to protect hospitals and stocks of Tamiflu, truck drivers to deliver supplies, funeral directors, morticians and gravediggers, administrators and managers and politicians to make the priority decisions we need to keep things functioning – and on and on and on (oh and ethicists of course to ask the difficult questions.)
Again, what do you think? Are there some occupations or roles that are more important than others in a pandemic situation? If so, what are they and should members of those professions be pushed to the head of the queue?
4) Is there any evidence that the person is significantly more likely to survive than others?
This one seems strangely out of place in this list as it seems to be just an extension of the medical criteria we saw in the first set of triage criteria. But it does take things an interesting step further. Typically we make medical decisions on the basis of need. The first criterion is that the person needs, and could benefit from access to critical care or a ventilator. This ups the ante – now it concerns people who are most likely to benefit. Who would these people be? We don’t know yet, of course, but we can make some educated guesses. In a novel flu strain there may be some benefits to having been exposed to other strains of flu. That is more likely to be the case for people who are older rather than the young. And amongst that older group there would be benefits to being generally healthy. So, as a group it could be the case that older otherwise healthy people would be more likely to survive than others.
So again, what do you think? This is a return to a consequentialist style approach – we are seeking to maximise the good and we do that by treating those most likely to survive.
5) Is the patient significantly younger than the others, thus at risk of losing more years of life?
This again, is a consequentialist form of reasoning. If you save a young person’s life rather than an older person’s you are likely to get a better return, at least in terms of years lived, from the young person who may live a long time, over the older person who has fewer years to live. But is more necessarily better? Is it better to try to save the young delinquent, drug-abusing teenager, over the older, at-the-peak-of-her-career, cancer researcher? Again, what seems straightforward and uncontroversial – a prejudice in favour of the young, seems far more difficult to defend on second reflection.
Conclusions
We are exploring new and dangerous territory. The stated objectives of proposing these triage criteria is to remove the decision from the idiosyncratic whim of an individual triage officer and share the decision amongst a group that in turn can ground the decision in a set of principles. These are important objectives. And, the criteria that are proposed have some common sense behind them – isn’t it a good idea to do the most good that we can – and don’t we, as a community, owe something to those who provide care on our behalf. But, we give up a great deal as we travel in that direction. We pride ourselves on our values of equality and diversity. We do not believe that any one is intrinsically more worthy of social benefit than anyone else, and we celebrate diversity of values and difference in ways of life. In Canadian health care that is put into practice through equality of access and care based on need. If you need the service, and it is available you will be put on a waiting list (which, in effect is a way of fairly distributing a scarce resource through random allocation.) Access to the service does not depend on who you are, ability to pay, or your job or role, or even why or how you contracted the disease in the first place. Should we abandon those principles in the emergency of a pandemic? If we do abandon them we may well achieve a greater good for the community, but at what price to the values that made that community what it is in the first place?
As always I would welcome you comments.
Mandatory Vaccinations?
Flu season is imminent and fears of a possible H1N1 flu pandemic are rife. Recent reports from Vancouver Island suggest that there may be the beginnings of an outbreak there; and across Canada and around the world health authorities are gearing up. Those preparations of course include vaccination campaigns and various strategies are being entertained to encourage people, especially health care providers to get vaccinated. But what happens when encouragement is unsuccessful, what happens if too few health care workers agree to get vaccinated? It is unknown what percentage of healthcare workers will choose to get vaccinated this year, but in previous years, despite extensive campaigns, many healthcare organizations report vaccination rates that hover around 50%. New York State has decided to take more drastic action. It will require health care workers to get a vaccination by November 30th a move that has met with concerted opposition – particularly from the unions that represent health-care workers.
So, just what the issues at stake in mandatory vaccinations?
Community Benefit, Personal Risk
The whole point of vaccination is to eliminate, or minimize a particular disease or disorder from a community. The idea, of course, is that if sufficient numbers in a population are immune to a disease then even if that disease enters the community its spread will be limited. So, it is good for a community if its members are vaccinated. However, typically, vaccination is not completely without risk. Some very small proportion of the population may suffer an adverse reaction to the vaccine. In extreme cases the result could be permanent injury, or death. However, from a population perspective, immunity for the group is worth the risk that a very small number of members of the group suffer adverse consequences. It is in the interest of the community that we have vaccination programmes. But, of course, it does not look that way from the perspective of the person who ends up suffering as a result of the vaccine. Paradoxically, from a completely self-interested perspective each individual should wish that everyone else in the community be vaccinated in order to achieve so-called “herd immunity” while he or she does not – thus “free-loading” on the risks taken by others.
Personal risk-benefit analysis
For each individual there is also a personal risk-benefit analysis. On the one hand there is the risk of contracting the disease, on the other hand there is the risk associated with the vaccine. In some cases the risk-benefit analysis is simple. If the disease is catastrophic, and the chances of catching it are high while the known risks of the vaccine are very small, then it may well be prudent for me to have the vaccine. However, at the other end of the spectrum, if the effects of the disease are quite mild, then any risk associated with the vaccine may not be worth taking.
The risk benefit analysis is further complicated for the flu. Otherwise healthy health care workers may have little to fear from contracting the H1N1 virus; the effects on them may be relatively mild. But that is not the case for the vulnerable populations with whom the health care workers work. The more prevalent the H1N1 virus is in the population, and the more prevalent it is especially amongst health care workers, the more likely it is that significant numbers of vulnerable populations will catch the flu: with potentially catastrophic consequences.
Personal Freedom
The other set of arguments that gets offered on this topic tends to be grounded in personal freedom. What gives the state the right to tell me that I have to have a substance injected into my body? What happens to notions of bodily integrity and personal control if it is possible for the state to require an injection? How could the state justify that sort of intrusion into a person’s bodily integrity? (In passing I would suggest that the arguments grounded in religious belief are a sub set of the arguments grounded in personal freedom. It may be a person’s religious beliefs that cause him or her to wish to exercise control over his or her body in this way.)
An employer’s perspective
Let us complicate thing slightly. If an employee is sick, for instance with the flu, then he or she is unable to work. Most health care organizations provide some form of sickness benefits for their employees. If an employee is sick then not only is his or her valuable contribution lost to the community, the employer also has to continue to pay that employee. It is therefore in the interest of the employer to reduce days lost to sickness to a minimum. So, it is in the interest of an employer to encourage vaccination to prevent sickness.
Doing good for others
So far we have looked at this issue solely from a self-interested view, but there is a further, significant perspective. Vaccination for health care workers imposes a small – perhaps negligible personal risk, but the potential benefit for the vulnerable populations served by health care workers is huge. Should we, as health care workers do something with which we may not agree, for the sake of the good it will bring to others? (Pretty clearly I think the answer to that question ought to be a yes...)
Compulsory vaccination
So, we come back to compulsory vaccination. Much is lost if a community, or an organization uses force or power to achieve even a worthwhile or beneficial goal. Individuals are immediately pushed onto the defensive, with a reflexive retreat to “rights” and entitlement (itself a form of power.) We very rapidly get locked into an “us” versus “them” struggle where the real benefits of the programme at hand may be lost in a struggle over power and authority. So, how do we avoid that outcome? I’m sorry to sound a little clichéd here, but the way forward is through good-will and good reasoning. The good-will comes in through a reluctance to use power and a willingness to communicate openly and honestly in a reasoned and evidence-based fashion. The good reasoning will be seen in a thorough-going commitment to the use of the best available evidence. We have lost trust in our civic discourse. We are fearful that we are being deceived, or that the facts are being “spun” to achieve a predetermined outcome. In the health care community we need to rebuild that trust – not blind faith, but a trust grounded in openness and good reasons. The issue of compulsory vaccination for H1N1 for health care workers is one of the issues where we can begin to rebuild the trust in health care. If compulsory vaccination is viewed by some as necessary – just what are the evidential grounds? If some people are going to be required to give up some of their personal freedoms how do we reward them for doing that and how do we compensate them (or their families) in the tragic event that there are adverse consequences for an individual as a result of the pursuit of a community good?
Let us watch, and participate in that discussion, and let each of us be quick to reason and slow to retreat to the exercise of power.
Flu season is imminent and fears of a possible H1N1 flu pandemic are rife. Recent reports from Vancouver Island suggest that there may be the beginnings of an outbreak there; and across Canada and around the world health authorities are gearing up. Those preparations of course include vaccination campaigns and various strategies are being entertained to encourage people, especially health care providers to get vaccinated. But what happens when encouragement is unsuccessful, what happens if too few health care workers agree to get vaccinated? It is unknown what percentage of healthcare workers will choose to get vaccinated this year, but in previous years, despite extensive campaigns, many healthcare organizations report vaccination rates that hover around 50%. New York State has decided to take more drastic action. It will require health care workers to get a vaccination by November 30th a move that has met with concerted opposition – particularly from the unions that represent health-care workers.
So, just what the issues at stake in mandatory vaccinations?
Community Benefit, Personal Risk
The whole point of vaccination is to eliminate, or minimize a particular disease or disorder from a community. The idea, of course, is that if sufficient numbers in a population are immune to a disease then even if that disease enters the community its spread will be limited. So, it is good for a community if its members are vaccinated. However, typically, vaccination is not completely without risk. Some very small proportion of the population may suffer an adverse reaction to the vaccine. In extreme cases the result could be permanent injury, or death. However, from a population perspective, immunity for the group is worth the risk that a very small number of members of the group suffer adverse consequences. It is in the interest of the community that we have vaccination programmes. But, of course, it does not look that way from the perspective of the person who ends up suffering as a result of the vaccine. Paradoxically, from a completely self-interested perspective each individual should wish that everyone else in the community be vaccinated in order to achieve so-called “herd immunity” while he or she does not – thus “free-loading” on the risks taken by others.
Personal risk-benefit analysis
For each individual there is also a personal risk-benefit analysis. On the one hand there is the risk of contracting the disease, on the other hand there is the risk associated with the vaccine. In some cases the risk-benefit analysis is simple. If the disease is catastrophic, and the chances of catching it are high while the known risks of the vaccine are very small, then it may well be prudent for me to have the vaccine. However, at the other end of the spectrum, if the effects of the disease are quite mild, then any risk associated with the vaccine may not be worth taking.
The risk benefit analysis is further complicated for the flu. Otherwise healthy health care workers may have little to fear from contracting the H1N1 virus; the effects on them may be relatively mild. But that is not the case for the vulnerable populations with whom the health care workers work. The more prevalent the H1N1 virus is in the population, and the more prevalent it is especially amongst health care workers, the more likely it is that significant numbers of vulnerable populations will catch the flu: with potentially catastrophic consequences.
Personal Freedom
The other set of arguments that gets offered on this topic tends to be grounded in personal freedom. What gives the state the right to tell me that I have to have a substance injected into my body? What happens to notions of bodily integrity and personal control if it is possible for the state to require an injection? How could the state justify that sort of intrusion into a person’s bodily integrity? (In passing I would suggest that the arguments grounded in religious belief are a sub set of the arguments grounded in personal freedom. It may be a person’s religious beliefs that cause him or her to wish to exercise control over his or her body in this way.)
An employer’s perspective
Let us complicate thing slightly. If an employee is sick, for instance with the flu, then he or she is unable to work. Most health care organizations provide some form of sickness benefits for their employees. If an employee is sick then not only is his or her valuable contribution lost to the community, the employer also has to continue to pay that employee. It is therefore in the interest of the employer to reduce days lost to sickness to a minimum. So, it is in the interest of an employer to encourage vaccination to prevent sickness.
Doing good for others
So far we have looked at this issue solely from a self-interested view, but there is a further, significant perspective. Vaccination for health care workers imposes a small – perhaps negligible personal risk, but the potential benefit for the vulnerable populations served by health care workers is huge. Should we, as health care workers do something with which we may not agree, for the sake of the good it will bring to others? (Pretty clearly I think the answer to that question ought to be a yes...)
Compulsory vaccination
So, we come back to compulsory vaccination. Much is lost if a community, or an organization uses force or power to achieve even a worthwhile or beneficial goal. Individuals are immediately pushed onto the defensive, with a reflexive retreat to “rights” and entitlement (itself a form of power.) We very rapidly get locked into an “us” versus “them” struggle where the real benefits of the programme at hand may be lost in a struggle over power and authority. So, how do we avoid that outcome? I’m sorry to sound a little clichéd here, but the way forward is through good-will and good reasoning. The good-will comes in through a reluctance to use power and a willingness to communicate openly and honestly in a reasoned and evidence-based fashion. The good reasoning will be seen in a thorough-going commitment to the use of the best available evidence. We have lost trust in our civic discourse. We are fearful that we are being deceived, or that the facts are being “spun” to achieve a predetermined outcome. In the health care community we need to rebuild that trust – not blind faith, but a trust grounded in openness and good reasons. The issue of compulsory vaccination for H1N1 for health care workers is one of the issues where we can begin to rebuild the trust in health care. If compulsory vaccination is viewed by some as necessary – just what are the evidential grounds? If some people are going to be required to give up some of their personal freedoms how do we reward them for doing that and how do we compensate them (or their families) in the tragic event that there are adverse consequences for an individual as a result of the pursuit of a community good?
Let us watch, and participate in that discussion, and let each of us be quick to reason and slow to retreat to the exercise of power.
Tuesday, September 8, 2009
Flu, Pandemics and the Duty to Provide Care
It is back-to-school time – and back-to-school heralds the beginning of the flu season and triggers worries about the return of the H1N1 virus. Most of the health care organizations I work with in Ontario have been engaged for some time in a process of pandemic planning, a “what-if” planning exercise that seeks to prepare organizations for at least some of the eventualities that will unfurl in the event of a debilitating pandemic.
There are many ethical issues that require discussion as one plans for a pandemic, I want to mention one and go a little further into another. First, the mention:
Modes of health care – from patient centred care to public health
One of the great lessons from SARS in Ontario was the way in which the form of delivery and the modes of thinking changed during SARS. Before SARS the slogan in many facilities was “patient (client) centred (focussed) care. This is a development of the standard model of health care delivery. In this model, the primary relationship is between the patient, who presents with his or her symptoms and the care-giver (archetypically the physician) who diagnoses and prescribes. The model is individualistic and rights-based, with the patient or client at the heart of the enterprise and with a great deal of scope and authority for the individual physician to practise. But, of course, as SARS unfolded that model of health care and those ways of thinking were abandoned. Instead the model of health care switched to something far more like public health. Instead of the individual patient standing at the centre of the health care relationship, the dominant relationship became that between the community, and an enemy – in this case the bug. And, health care workers became the front line troops in that battle. That shift of emphasis necessitated a whole series of changes in behaviour. The rights of individual patients (to have visitors for instance) were abandoned, and physicians and others lost a great deal of their authority to practise as they saw appropriate. (You have to wear a mask...) I’m not sure that we have fully recognised the impact of that shift nor articulated its effects. That shift will occur again in the next pandemic. It will have to. In a community emergency the rights of each individual will be held to be of less account than the needs of the many. That is as it should be – however, we will need to exercise the greatest vigilance to understand what we are doing and why – to minimize the loss of rights and to reinstate those rights at the earliest opportunity.
If that is just a mention, let’s move on to look at the “duty to provide care.”
The duty to provide care.
Normally when this issue gets discussed it is in the context of a duty on health care workers to provide care to others even under conditions of personal risk. Again, one of the lessons from SARS was that even though that disease was primarily a disease of health care workers, care providers continued to work even under conditions of personal risk. Is there a “duty” to provide care and to whom does that duty apply. That tends to be where we start, but I am not sure that is the most interesting question to ask on this topic. It seems pretty clear that there is some sort of duty on health care workers to provide care. Health care is a “special” enterprise which is proudly unlike other more commercially oriented activities. Health care workers will often speak of a “calling” or an “avocation” and of being motivated by a desire to help others and serve the community. In that respect it is not unlike the police and emergency services – or indeed the armed forces. We would look quite askance at the police officer or member of the military who refused to serve because it was risky. So, if there is a duty – what are its limits?
In a number of hospitals with which I work we have had a series of conversations about pandemic planning, and the question of the ”duty to provide care” surfaces in a different form. Let me put it like this. Imagine you are a nurse, and as a nurse you recognize that you have a duty to provide care. It is your job – and you are obliged to go in to work. But let us also imagine that you are a Mum. Your duty as a Mum is to care for your children, what happens when those two duties collide?
It is worth saying at the outset that this moral dilemma is not one that can be solved by looking to professional ethics. The duty of the nurse – as a nurse, is to provide care, but the personal obligation – if you like the duty of the Mother, is to take care of her children. They are both moral (or ethical) obligations that arise from two roles the person has. Nor has the person done anything wrong to create this situation. She just has more than one role (as many, or indeed all of us do.) But let us imagine she can’t do both. What will she do? Is there a “should” here? We haven’t detailed the situation, and it is easy to imagine cases that fall along the entire spectrum. At either end of the spectrum there will be situations where it is clear that anyone should do one thing rather than another – the negative impact on the children is very minor and the benefits you bring to your community by going to work are very great – and vice versa. But what happens in the great grey mass of cases in the middle. How does that individual person decide what she (or he) will do? (I don’t think this conversation necessarily presupposes one gender or another, I’m more interested in looking at the roles people play and the obligations that arise through those roles.)
It is at this point that the discussion inevitably takes a more interesting and more practical turn. The organizations doing the pandemic planning, and the communities they serve, have an interest in getting their care providers to come to work – so how do they help them do that? How do organizations support their workers so that those workers can take care of their family and other responsibilities and still, wherever possible, be able to come to work? The turn, then, is from what looks like a question of professional ethics, its impact on the individual, and a puzzle about how to motivate people to do their duty; to a genuine moral dilemma which pits two extremely important ethical values or principles against each other. So that brings us to the practical questions. What steps are individuals taking in their personal lives to attempt to ensure that their personal obligations are taken care of in a pandemic, and secondly what steps are the organization taking to try to create the conditions that make it as likely as possible that people will be able to come to work?
It is back-to-school time – and back-to-school heralds the beginning of the flu season and triggers worries about the return of the H1N1 virus. Most of the health care organizations I work with in Ontario have been engaged for some time in a process of pandemic planning, a “what-if” planning exercise that seeks to prepare organizations for at least some of the eventualities that will unfurl in the event of a debilitating pandemic.
There are many ethical issues that require discussion as one plans for a pandemic, I want to mention one and go a little further into another. First, the mention:
Modes of health care – from patient centred care to public health
One of the great lessons from SARS in Ontario was the way in which the form of delivery and the modes of thinking changed during SARS. Before SARS the slogan in many facilities was “patient (client) centred (focussed) care. This is a development of the standard model of health care delivery. In this model, the primary relationship is between the patient, who presents with his or her symptoms and the care-giver (archetypically the physician) who diagnoses and prescribes. The model is individualistic and rights-based, with the patient or client at the heart of the enterprise and with a great deal of scope and authority for the individual physician to practise. But, of course, as SARS unfolded that model of health care and those ways of thinking were abandoned. Instead the model of health care switched to something far more like public health. Instead of the individual patient standing at the centre of the health care relationship, the dominant relationship became that between the community, and an enemy – in this case the bug. And, health care workers became the front line troops in that battle. That shift of emphasis necessitated a whole series of changes in behaviour. The rights of individual patients (to have visitors for instance) were abandoned, and physicians and others lost a great deal of their authority to practise as they saw appropriate. (You have to wear a mask...) I’m not sure that we have fully recognised the impact of that shift nor articulated its effects. That shift will occur again in the next pandemic. It will have to. In a community emergency the rights of each individual will be held to be of less account than the needs of the many. That is as it should be – however, we will need to exercise the greatest vigilance to understand what we are doing and why – to minimize the loss of rights and to reinstate those rights at the earliest opportunity.
If that is just a mention, let’s move on to look at the “duty to provide care.”
The duty to provide care.
Normally when this issue gets discussed it is in the context of a duty on health care workers to provide care to others even under conditions of personal risk. Again, one of the lessons from SARS was that even though that disease was primarily a disease of health care workers, care providers continued to work even under conditions of personal risk. Is there a “duty” to provide care and to whom does that duty apply. That tends to be where we start, but I am not sure that is the most interesting question to ask on this topic. It seems pretty clear that there is some sort of duty on health care workers to provide care. Health care is a “special” enterprise which is proudly unlike other more commercially oriented activities. Health care workers will often speak of a “calling” or an “avocation” and of being motivated by a desire to help others and serve the community. In that respect it is not unlike the police and emergency services – or indeed the armed forces. We would look quite askance at the police officer or member of the military who refused to serve because it was risky. So, if there is a duty – what are its limits?
In a number of hospitals with which I work we have had a series of conversations about pandemic planning, and the question of the ”duty to provide care” surfaces in a different form. Let me put it like this. Imagine you are a nurse, and as a nurse you recognize that you have a duty to provide care. It is your job – and you are obliged to go in to work. But let us also imagine that you are a Mum. Your duty as a Mum is to care for your children, what happens when those two duties collide?
It is worth saying at the outset that this moral dilemma is not one that can be solved by looking to professional ethics. The duty of the nurse – as a nurse, is to provide care, but the personal obligation – if you like the duty of the Mother, is to take care of her children. They are both moral (or ethical) obligations that arise from two roles the person has. Nor has the person done anything wrong to create this situation. She just has more than one role (as many, or indeed all of us do.) But let us imagine she can’t do both. What will she do? Is there a “should” here? We haven’t detailed the situation, and it is easy to imagine cases that fall along the entire spectrum. At either end of the spectrum there will be situations where it is clear that anyone should do one thing rather than another – the negative impact on the children is very minor and the benefits you bring to your community by going to work are very great – and vice versa. But what happens in the great grey mass of cases in the middle. How does that individual person decide what she (or he) will do? (I don’t think this conversation necessarily presupposes one gender or another, I’m more interested in looking at the roles people play and the obligations that arise through those roles.)
It is at this point that the discussion inevitably takes a more interesting and more practical turn. The organizations doing the pandemic planning, and the communities they serve, have an interest in getting their care providers to come to work – so how do they help them do that? How do organizations support their workers so that those workers can take care of their family and other responsibilities and still, wherever possible, be able to come to work? The turn, then, is from what looks like a question of professional ethics, its impact on the individual, and a puzzle about how to motivate people to do their duty; to a genuine moral dilemma which pits two extremely important ethical values or principles against each other. So that brings us to the practical questions. What steps are individuals taking in their personal lives to attempt to ensure that their personal obligations are taken care of in a pandemic, and secondly what steps are the organization taking to try to create the conditions that make it as likely as possible that people will be able to come to work?
Tuesday, June 30, 2009
Pay it forward and kidney donation chains
Pay it forward and kidney donation chains
Altruism is, of course, a good thing, but altruism tends to have its limits. For instance, some transplant programmes will accept an altruistic kidney donation from a stranger for a stranger, while others will not. We are quite familiar with the “usual” case where a family member, loved one, or even a friend offers a kidney to someone he or she knows and cares for. This type of donation raises its own ethical issues – what for instance would it mean for such a decision to donate to be “free” or uncoerced? But generally we agree that it is a “normal” even desirable thing to do to want to help a family member or friend. These gifts are generous, altruistic and loving, but within the context of family and friendship they are understood. The family ought to be the home of loving, caring and altruistic feelings.
(I can’t just let this piece go at the moment so let’s keep exploring it. I wonder if there are shared expectations here, or if we each have our own, completely idiosyncratic views. Would we (would I) expect a spouse to wish to donate to a spouse? A parent to a child, or a child to a parent? One adult sibling to another, to a cousin – or to my best friend? To what extent would other factors be relevant – the health of the donor, the “worthiness” of the recipient and so on. If you knew that an acquaintance or friend had decided not to donate to his or her spouse – or child, would that change your opinion of the person? If we relate these questions to the health care professional who is counselling or advising someone contemplating donation to what extent do our own values and expectations play a role as we enter that discussion?)
But what about the donation by one stranger to another? How do we understand the offer of a kidney by one human being to another, based purely on the other’s need? As we said at the outset, some programmes would accept that offer, others would not. Why wouldn’t some programmes accept that offer? It is difficult to get programmes to be specific about this issue but I think the reasoning goes something like this. That altruistic gift is just too much. There are risks involved and consequences for the donor. Those risks and consequences make sense in the context of a family where some self-sacrifice might be expected, but they just do not make sense outside of that context. So, either the donor doesn’t really understand what is involved, or there is somehow something “wrong” with wanting to make that offer. (It should, of course be pointed out that there is a strong religious, Christian, tradition of self sacrifice that itself might provide a context for wanting to make the donation. But outside of those religious traditions how do we understand that great a desire to do good for others? And, should those of us who do not feel compelled to offer a kidney to help a stranger feel somehow morally guilty or inadequate?)
So, back to the really neat move that capitalizes on the desire to help the ones we know and love to benefit a broader range of people we do not know. There are a number of transplant centres that are organizing kidney donation chains. The donation chain works from the fact that in some, perhaps many, cases a person in need of a transplant has a willing, but unmatched donor. What would happen if you were ensured that your partner, in need of the kidney, would receive one from a third party if you donated yours to someone else with whom you are matched? So, you give to a stranger, whose donor friend gives to another stranger, whose donor friend gives to another stranger, whose donor friend ultimately donates to your partner. The outcome is that many more kidneys are made available for transplant. It is an elegant and practical method for capitalizing on “ordinary” altruism to reach extraordinary results.
Bravo to all involved.
Altruism is, of course, a good thing, but altruism tends to have its limits. For instance, some transplant programmes will accept an altruistic kidney donation from a stranger for a stranger, while others will not. We are quite familiar with the “usual” case where a family member, loved one, or even a friend offers a kidney to someone he or she knows and cares for. This type of donation raises its own ethical issues – what for instance would it mean for such a decision to donate to be “free” or uncoerced? But generally we agree that it is a “normal” even desirable thing to do to want to help a family member or friend. These gifts are generous, altruistic and loving, but within the context of family and friendship they are understood. The family ought to be the home of loving, caring and altruistic feelings.
(I can’t just let this piece go at the moment so let’s keep exploring it. I wonder if there are shared expectations here, or if we each have our own, completely idiosyncratic views. Would we (would I) expect a spouse to wish to donate to a spouse? A parent to a child, or a child to a parent? One adult sibling to another, to a cousin – or to my best friend? To what extent would other factors be relevant – the health of the donor, the “worthiness” of the recipient and so on. If you knew that an acquaintance or friend had decided not to donate to his or her spouse – or child, would that change your opinion of the person? If we relate these questions to the health care professional who is counselling or advising someone contemplating donation to what extent do our own values and expectations play a role as we enter that discussion?)
But what about the donation by one stranger to another? How do we understand the offer of a kidney by one human being to another, based purely on the other’s need? As we said at the outset, some programmes would accept that offer, others would not. Why wouldn’t some programmes accept that offer? It is difficult to get programmes to be specific about this issue but I think the reasoning goes something like this. That altruistic gift is just too much. There are risks involved and consequences for the donor. Those risks and consequences make sense in the context of a family where some self-sacrifice might be expected, but they just do not make sense outside of that context. So, either the donor doesn’t really understand what is involved, or there is somehow something “wrong” with wanting to make that offer. (It should, of course be pointed out that there is a strong religious, Christian, tradition of self sacrifice that itself might provide a context for wanting to make the donation. But outside of those religious traditions how do we understand that great a desire to do good for others? And, should those of us who do not feel compelled to offer a kidney to help a stranger feel somehow morally guilty or inadequate?)
So, back to the really neat move that capitalizes on the desire to help the ones we know and love to benefit a broader range of people we do not know. There are a number of transplant centres that are organizing kidney donation chains. The donation chain works from the fact that in some, perhaps many, cases a person in need of a transplant has a willing, but unmatched donor. What would happen if you were ensured that your partner, in need of the kidney, would receive one from a third party if you donated yours to someone else with whom you are matched? So, you give to a stranger, whose donor friend gives to another stranger, whose donor friend gives to another stranger, whose donor friend ultimately donates to your partner. The outcome is that many more kidneys are made available for transplant. It is an elegant and practical method for capitalizing on “ordinary” altruism to reach extraordinary results.
Bravo to all involved.
Thursday, June 4, 2009
A story that illustrates the concept of "futility"
A story that illustrates a discussion about futility
This story concerns a patient, a youngish man who has a diagnosis of ALS (or Lou Gehrig’s disease.) ALS is fatal, the only real unknown is how long it will take for the patient to die. The patient was a part of a large ALS treatment programme at a major Canadian centre. This centre’s ALS treatment programme had a policy (or perhaps a practice) of not offering ventilator support to ALS patients at the end stages of the disease. (Ventilator support would be offered in the earlier stages of the disease with the expectation that the patient would be weaned from the ventilator. Terminal ventilation was not offered.) Well, you can imagine what happened. The patient reached the end stages of the disease and requested (demanded) that he be put on a ventilator. The team refused, it is against our policy (practice) they said.
At this stage we held an ethics case consultation, which was attended by most of the staff of the ALS programme and many representatives of the ICU. We are not going to offer a ventilator said the head of the ALS treatment programme, no agreed the head of the ICU, “It’s futile.”
It is here that I will offer a word or two on the role of the ethicist. Often you can do all that needs to be done by putting your hand up and looking puzzled – or, as in this case repeating the last word of the previous sentence:
“Futile?”
“Well, yes,” they said, “it’s futile, it won’t cure his ALS.”
“No it won’t, but will it keep him alive?”
“Oh yes, it will keep him alive.”
So, the treatment or intervention, in this case a ventilator, is not “futile” or more precisely it is not medically futile. It will bring about the effect for which it was intended it will serve to keep this patient alive. The members of the team understood the power dynamic of the judgment of futility. They knew that the judgment that a treatment was or was not futile was theirs to make, they just misapplied the concept in this case. But the discussion continued.
“We won’t put him on a ventilator, it won’t do him any good, his quality of life will be awful.”
So let us go back to our dynamic of health care decision-making. If a treatment is available and has been offered to a patient the decision about whether or not that treatment is, from the patient’s perspective, worth having, is of course, up to the patient. It is up to the patient to decide if the quality of life that would be available with the treatment is something that he or she wants. At the risk of confusing the language a little, the patient has to decide if the treatment is “futile” from his or her perspective. Is there a point to the treatment from the outlook of the person concerned? This though is a judgement of “personal futility” not “medical futility.” Of course the information that is brought by the care team concerning the experiences of others and their perceptions of the quality of life that would be available with the treatment are very important. In most cases the care giving team will have far greater familiarity with patients who have experience of the treatment concerned and they will know the reports of those patients and they will know what it is like to care for a person under those conditions – this information will be crucial to the patient as she makes her or his decision. However, the care giving team has not lived that experience themselves, and, in any event the authority to make that choice lies with the patient.
So, to go back to our story. We soon established that the decision concerning whether the quality of life with the treatment would be worth having belongs to the patient. But the patient had made his position clear, he wanted the ventilator.
Finally, the head of the ICU said: “That’s not what my ventilators are for.” Now, perhaps there are other ways of putting this idea, but the concept is crucially important. What the head of the ICU was saying was that he only had a limited number of ventilators. If this patient got one of the ventilators then he would use it for months or possibly years. And then the outcome for that patient would be dead. On the other hand if that patient did not use the ventilator for that extended period of time it would be available to help many other people, who could benefit from the ventilator, recover and go home. Given the scarcity of the resource, the head of the ICU wanted to use it in the most productive way he could.
Health care professionals are faced with this type of decision all of the time. Given a scarce resource, how do we share it out – fairly and productively? Given the scarcity of resources, health care resource allocation is a “zero-sum game.” If one person gets “this” then “that” is not available for someone else. This is always and inevitably true. This is one area where the “futility” debate gets confused. A better way of thinking about this issue of resource allocation, rather than “futility” is to think instead of social “utility.” Is this benefit one that we, as a community, ought, or want to fund? The word “futile,” mistakenly and confusingly in my view, sometimes gets used in this context. Sometimes it is said that a treatment is “futile” if it brings only a very minor benefit, or if the benefit is very unlikely, or if the cost of providing the treatment is somehow disproportionate to any benefits that might accrue. In these cases the treatment is not “medically futile,” though it may well be the case that it is inappropriate, inadvisable or ought not to be offered.
Let’s finish this story with a look at who gets to decide what – and on what grounds. The care giving team, the physician is responsible for deciding which treatments might be effective, and if those treatments are available they can be offered to the patient. The patient then gets to decide whether or not he or she wants to receive any of those treatments or refuse all of them. But who decides what treatments are available? To go back to our story, who should decide whether or not ventilator support at the end stages of life is something that should be made available to Canadian patients should they want it? Is that the role of the treating physician at the bedside? I would say no. We want physicians at the bedside to be advocates for their patients – to seek the best possible treatment and the widest range of options available. We compromise that advocacy role if we expect the physician at the bedside to be a resource allocator who might have to decide, on value rather than medical grounds, that this patient ought not to receive this treatment because someone else could benefit from it more. The decision that a treatment ought not to be offered to a class of patients (rather than any particular individual) properly belongs to the community. Those who pay for the treatments need to decide what treatments they are prepared to pay for. This should be an informed debate, one that draws on the best evidence, both of effectiveness and cost effectiveness, it should be a compassionate debate, realising exactly what the stakes are, but ultimately it must be a rational debate where people of good will seek and give the best possible reasons and work towards the best possible outcomes.
This story concerns a patient, a youngish man who has a diagnosis of ALS (or Lou Gehrig’s disease.) ALS is fatal, the only real unknown is how long it will take for the patient to die. The patient was a part of a large ALS treatment programme at a major Canadian centre. This centre’s ALS treatment programme had a policy (or perhaps a practice) of not offering ventilator support to ALS patients at the end stages of the disease. (Ventilator support would be offered in the earlier stages of the disease with the expectation that the patient would be weaned from the ventilator. Terminal ventilation was not offered.) Well, you can imagine what happened. The patient reached the end stages of the disease and requested (demanded) that he be put on a ventilator. The team refused, it is against our policy (practice) they said.
At this stage we held an ethics case consultation, which was attended by most of the staff of the ALS programme and many representatives of the ICU. We are not going to offer a ventilator said the head of the ALS treatment programme, no agreed the head of the ICU, “It’s futile.”
It is here that I will offer a word or two on the role of the ethicist. Often you can do all that needs to be done by putting your hand up and looking puzzled – or, as in this case repeating the last word of the previous sentence:
“Futile?”
“Well, yes,” they said, “it’s futile, it won’t cure his ALS.”
“No it won’t, but will it keep him alive?”
“Oh yes, it will keep him alive.”
So, the treatment or intervention, in this case a ventilator, is not “futile” or more precisely it is not medically futile. It will bring about the effect for which it was intended it will serve to keep this patient alive. The members of the team understood the power dynamic of the judgment of futility. They knew that the judgment that a treatment was or was not futile was theirs to make, they just misapplied the concept in this case. But the discussion continued.
“We won’t put him on a ventilator, it won’t do him any good, his quality of life will be awful.”
So let us go back to our dynamic of health care decision-making. If a treatment is available and has been offered to a patient the decision about whether or not that treatment is, from the patient’s perspective, worth having, is of course, up to the patient. It is up to the patient to decide if the quality of life that would be available with the treatment is something that he or she wants. At the risk of confusing the language a little, the patient has to decide if the treatment is “futile” from his or her perspective. Is there a point to the treatment from the outlook of the person concerned? This though is a judgement of “personal futility” not “medical futility.” Of course the information that is brought by the care team concerning the experiences of others and their perceptions of the quality of life that would be available with the treatment are very important. In most cases the care giving team will have far greater familiarity with patients who have experience of the treatment concerned and they will know the reports of those patients and they will know what it is like to care for a person under those conditions – this information will be crucial to the patient as she makes her or his decision. However, the care giving team has not lived that experience themselves, and, in any event the authority to make that choice lies with the patient.
So, to go back to our story. We soon established that the decision concerning whether the quality of life with the treatment would be worth having belongs to the patient. But the patient had made his position clear, he wanted the ventilator.
Finally, the head of the ICU said: “That’s not what my ventilators are for.” Now, perhaps there are other ways of putting this idea, but the concept is crucially important. What the head of the ICU was saying was that he only had a limited number of ventilators. If this patient got one of the ventilators then he would use it for months or possibly years. And then the outcome for that patient would be dead. On the other hand if that patient did not use the ventilator for that extended period of time it would be available to help many other people, who could benefit from the ventilator, recover and go home. Given the scarcity of the resource, the head of the ICU wanted to use it in the most productive way he could.
Health care professionals are faced with this type of decision all of the time. Given a scarce resource, how do we share it out – fairly and productively? Given the scarcity of resources, health care resource allocation is a “zero-sum game.” If one person gets “this” then “that” is not available for someone else. This is always and inevitably true. This is one area where the “futility” debate gets confused. A better way of thinking about this issue of resource allocation, rather than “futility” is to think instead of social “utility.” Is this benefit one that we, as a community, ought, or want to fund? The word “futile,” mistakenly and confusingly in my view, sometimes gets used in this context. Sometimes it is said that a treatment is “futile” if it brings only a very minor benefit, or if the benefit is very unlikely, or if the cost of providing the treatment is somehow disproportionate to any benefits that might accrue. In these cases the treatment is not “medically futile,” though it may well be the case that it is inappropriate, inadvisable or ought not to be offered.
Let’s finish this story with a look at who gets to decide what – and on what grounds. The care giving team, the physician is responsible for deciding which treatments might be effective, and if those treatments are available they can be offered to the patient. The patient then gets to decide whether or not he or she wants to receive any of those treatments or refuse all of them. But who decides what treatments are available? To go back to our story, who should decide whether or not ventilator support at the end stages of life is something that should be made available to Canadian patients should they want it? Is that the role of the treating physician at the bedside? I would say no. We want physicians at the bedside to be advocates for their patients – to seek the best possible treatment and the widest range of options available. We compromise that advocacy role if we expect the physician at the bedside to be a resource allocator who might have to decide, on value rather than medical grounds, that this patient ought not to receive this treatment because someone else could benefit from it more. The decision that a treatment ought not to be offered to a class of patients (rather than any particular individual) properly belongs to the community. Those who pay for the treatments need to decide what treatments they are prepared to pay for. This should be an informed debate, one that draws on the best evidence, both of effectiveness and cost effectiveness, it should be a compassionate debate, realising exactly what the stakes are, but ultimately it must be a rational debate where people of good will seek and give the best possible reasons and work towards the best possible outcomes.
Wednesday, June 3, 2009
End of life care, advance directives, "euthanasia"
Euthanasia is in the news again. On May14th Margaret Somerville, the ethicist from Montreal ran an op-ed piece in the Ottawa citizen. Her anti active-euthanasia (or anti-assisted suicide) position seems to be grounded in a couple of ideas. One is that if a society permits active euthanasia then it contributes to a lessening of respect for life in that community, and somehow the state would be complicit in this, and this would cause “death to lose its moral context and us to lose our proper emotional response to it” (Ottawa Citizen May 14th page A15.) The other argument is that permitting any form of euthanasia is to set foot on a slippery slope which leads inevitably to a taking of lives that ought not to be taken.
Well, let’s go back to the beginning and run through some of the classic positions and arguments on the topic. First, a word about words. Some words have value connotations or associations – they carry their evaluative force right on the surface. Other words can be used without any particular value connotations or associations. So, for instance, the word “murder” carries its values on the surface. There are no “good” murders. To call an act a murder is to identify it as a wrongful killing. But not all killings are murders and not all killings are wrongful. So, for instance, a killing in self-defence would be viewed by many people as morally justifiable, as would be a killing of a combatant on the battlefield at a time of war. As we explore the ethical acceptability, or otherwise, of “euthanasia” we have to be careful how we use the words. Some people would associate a value connotation with the word “euthanasia,” typically a negative connotation. Others view the word “euthanasia” as value neutral. What we want to do is to explore the ethical acceptability of actions or practices, rather than the ethical connotations of a word. We want to make up our minds if it should be ethically acceptable for a physician (or anyone else for that matter) to deliberately deliver a lethal dose in order to end a life, or to choose not to start a feeding tube to prolong a life, or to refrain from performing a life-extending procedure, not to determine if the word “euthanasia” has ethical associations one way or the other. So, for the time being I will use the word “euthanasia” as if it was value-neutral, and will look more closely at particular actions to make our ethical evaluations. So, let’s start with some distinctions so that we can keep our ideas straight and our terminology clear.
Active and passive euthanasia.
Active euthanasia refers to deliberately taking a step, or performing an action that will cause the death of another person.
Passive euthanasia refers to refraining to take a step or perform an action that would save or prolong a life.
Voluntary, non-voluntary and involuntary euthanasia.
The voluntary/non-voluntary distinction has itself been further refined and there is some confusion and inconsistency in the way the words are used – I will use them like this:
Voluntary euthanasia occurs when a capable person chooses or decides to take a step or perform an action that will cause his or her death, or to refrain from taking an action that would prolong his or her life.
Non-voluntary euthanasia occurs when the person is not capable of making his or her own choice.
Involuntary euthanasia occurs against the express wishes of the person concerned.
So we can see how the categories combine. There can be Voluntary Active Euthanasia, Voluntary Passive Euthanasia, Non-Voluntary Active Euthanasia, Non-Voluntary Passive Euthanasia, Involuntary Active Euthanasia, and Involuntary Passive Euthanasia. We will deal with each of them in turn, but before we do that there is one further preliminary step. I will adopt a general stance in favour of freedom. That is, I believe that in an open and democratic society the default position should be one of freedom. We should be able to do... whatever, unless there are good reasons why we should not. That is, I will assume that it is those who would limit freedom who need to show why freedom should be limited, rather than those who would perform whatever act we might be discussing to show why they should be permitted to do it. So to apply that idea to euthanasia, it is up to those who would prevent people from practising any particular form of euthanasia to show why it should be prohibited, rather than up to those who would perform the act to show why it should be allowed.
Voluntary Active Euthanasia
In Canada it is not against the law to take one’s own life, it is not illegal to commit suicide. What is contrary to the criminal code is to counsel or aid someone in committing suicide. (Section 241 of the Criminal Code of Canada, C46) In Canada, what is often called assisted suicide – or physician assisted suicide is contrary to the criminal code. So, if the person does it him or her-self it is within the law, if she or he needs assistance, rendering that assistance would be unlawful. Now, answering a question about the legality of an action is not the same thing as asking about its ethical acceptability, but here the discussion becomes intensely personal. Can we put ourselves in another’s situation, feel his pain, or know her prospects? Can we stand outside and say – Aha.. intractable illness, only expected to live a month, severe and unremitting pain – in this circumstance it would be ethically acceptable for this person to choose not to continue with a life that is full of suffering without prospect of relief – but here in this other situation for this other person the pain is not so bad, the prospects a little better, for this person he should choose to live and should try to make something meaningful of his suffering. The point I am trying to make here is that if people are entitled to choose how they live their lives, if they are entitled to choose how they make those lives meaningful – then we are stuck with people being able to choose when their lives lack meaning or to determine that life under the conditions available is not – to the person concerned, worth having. So far we have been looking at the issue from the perspective of the person concerned. We might, as friends or professionals, support a friend or a client as he or she explores the options available and seeks to make the best choice that she can – but we are not directly involved – we are not the decision-maker and we are not the agent that puts any decision into practice. The situation is different, in a community where assisted, or physician assisted suicide is legal. First, under these conditions there is some sort of legal process established that protects participants from prosecution if certain conditions are met, and second someone, other than the patient or client is involved in performing an act that ends a life. In a community like this the community has sanctioned the taking of a life under certain conditions. The community is complicit. Many of the arguments against permitting assisted, or physician-assisted suicide hinge on exactly this idea. What does it mean for a community to allow its citizens to take the lives of other members of the community? Has the community failed in providing good supportive palliative care, or adequate pain relief, or the conditions that allow people to live meaningful lives? Has a community that allows assisted suicide somehow failed to adequately respect human life as such? Then there are concerns about the people called upon to assist the dying person. Would permitting, for example, physicians to assist in acts of suicide place intolerable ethical burdens on those physicians? Would they become somehow coarsened to humanity and human suffering? (Or does that coarsening occur when physicians are forced to assist in extending a patient’s life when that life has become too great a burden for the person to bear?) This is the heart of the euthanasia debate – what sort of community do we want? Are we, as a community, prepared to be complicit, as we honour an individual’s choice (or right) to live – or end, his life as he sees fit? Or will we, as a community, turn away as people in their own intractable pain cry out for mercy?
Voluntary passive euthanasia
In Canada this is done all of the time. Any time a person refuses a potentially life-sustaining treatment, any time a person decides to forego a resuscitation attempt, any time an individual decides not to start a feeding tube we are practising voluntary passive euthanasia. In Ontario the right to refuse a treatment, including a life sustaining treatment is guaranteed in the Health Care Consent Act. (http://www.e-laws.gov.on.ca/html/statutes/english/elaws_statutes_96h02_e.htm) Section 10:
No treatment without consent
10. (1) A health practitioner who proposes a treatment for a person shall not administer the treatment, and shall take reasonable steps to ensure that it is not administered, unless,
(a) he or she is of the opinion that the person is capable with respect to the treatment, and the person has given consent; or
(b) he or she is of the opinion that the person is incapable with respect to the treatment, and the person’s substitute decision-maker has given consent on the person’s behalf in accordance with this Act. 1996, c. 2, Sched. A, s. 10 (1).
This is quite clear, the capable patient is entitled to refuse a treatment and the health care practitioner is required to honour that refusal. We can look at this in terms of rights and bodily integrity. The basic idea is that a person is entitled to say what happens to his or her body. My bodily integrity is mine to control. In the simplest possible terms I am entitled to say who touches me, how and for what purpose. (I can lose that “right” for instance if I am about to harm someone else, but generally I am entitled to say what happens to me. (Look what would be the case if this were not so. If someone else could use my body for his or her own purposes then I would be being treated as some sort of a thing – not a human agent with my own will and person. (This idea probably has its best expression in the writings of the philosopher Emmanuel Kant, but that could be the subject of a post another day.))
We should return to our word about words. In my travels around the hospitals and health-care facilities I work with I have often been told (and indeed often with some indignation) “We don’t practice euthanasia...” The person talking is normally thinking of active euthanasia and usually has ascribed negative value connotations to the word “euthanasia.” If you then ask if he or she would honour a capable patient’s refusal of a treatment then, of course the answer is always yes.
Non-voluntary active and passive euthanasia
“Non-voluntary” expresses the idea that the person is not capable of expressing his or her views and is not in a position to say what he or she would want. A person could be in this situation for a variety of reasons. The crucial distinction is between those who have never been capable of expressing their wishes concerning treatment and those that were once capable. In the case of people who were once capable a variety of mechanisms exist to allow the person to carry his or her wishes, expressed when he or she is capable, forward into a time when he or she is not. In written form these can be called “Advance directives,” “Living wills,” or sometimes “Odysseus contracts.” The general principle is the same. The person tries to articulate as clearly as possible how he or she would wish to be treated at some time in the future when he or she is no longer able to speak for him or her-self. The second similar, but slightly different, approach is to name a person to act on your behalf at a time when you become incapable. In Ontario this person can be named as “Power of Attorney” (either for finances or personal care, we are interested here in the Power of Attorney for Personal Care.) You give the power of attorney for personal care the authority to make the health care decisions that you would have made yourself if you were capable.
Advance directives and Power of Attorney for Personal Care
There is a great deal that is worth saying on this topic. In the first instance let me support both advance directives and the formal creation of a power of attorney for personal care. If you want to have your affairs in order and if you want to minimize your burden on your loved ones should you become incapable of speaking for yourself you really should have thought these things through. The purpose of both approaches is the same; it is to allow you to project your will now into a future when you are not able to speak for yourself. In an advance directive you specify the sorts of treatments you would not want under conditions that you also specify. And then your substitute decision-maker and indeed your health care team should honour your refusals of treatment. I say “should” here because there is an important wrinkle to advance directives and the direction they provide to your substitute decision-maker. Your substitute decision-maker is charged with following your instructions, or where no instructions exist, your values. However, the substitute decision-maker has to determine whether, or how, the instructions that you previously provided fit the actual circumstances you are faced with. To take a really simple example, suppose I told my substitute decision-maker or power of attorney: “No tubes.” Or, even more precisely, “I would not want a ventilator, and I don’t want tubes stuck in me.” What would happen if I was in an accident, or suffered from an illness where the best medical evidence is that with a short course of treatment, a treatment that would include intubation and ventilator support, I would be able to return to my previous way of life? What should my substitute decision-maker do? The general point is that it is very difficult, perhaps impossible to specify in advance all of the things that might happen and then to identify, again in advance, what I would want to happen under those circumstances. This means that the substitute decision-maker will always be in a position of having to work out what I meant, what I would have wanted had I known that I would be faced with this exact set of circumstances. To go back to our previous example, my substitute decision-maker should be able to work out that what I meant when I said “no tubes” is that I would not wish to spend the rest of my life on a ventilator or with a feeding tube, but if that sort of intervention was necessary, and highly temporary, leading to what I would view as a full recovery then I would have wanted it. The key piece for the substitute decision-maker is to try to honour the person that I am, to respect me and my values and to work out – from my life as I have lived it and from the instructions I have given, what I would want to happen.
Those who have never been able to speak for themselves.
The situation is different for people who either through incapacity, youth, or mental development have never been “capable” of consenting, or otherwise to medical treatment. For these people the guide of “previously expressed wishes” is not available to help a substitute decision-maker decide what to do, rather the substitute decision-maker has to use some sort of test of “best interests.” Now “best interests” will have to be the subject of another post because the overall topic is more complicated than it at first appears. The general issue is that for capable adults we pretty much allow the person concerned to self-define what would count as his or her best interests. That is, the capable individual creates or establishes his or her best interests. Best interests are defined from the inside. But that approach is not available for people who have never been capable. For those people the substitute decision-maker and care-giver are required to try to determine “best interests’ from the outside. This makes decisions about, for instance, end-of-life care extremely burdensome for those who have to make the decisions solely on their best evaluation of another person’s “best interests.” Here perhaps the best practical advice is to make such decisions collaboratively. We do better if we share the burden of decision-making with those who know the person well, those who are experienced in the care of people with the relevant illness or disease, and those who genuinely care about the person’s complete well-being.
So, to go back to our categories, passive non-voluntary euthanasia happens often. It occurs whenever a power of attorney for personal care, or substitute decision-maker makes the decision to forego or discontinue a possibly life-extending treatment or intervention. As we have noted, the role of the substitute decision-maker or power of attorney is to do what the patient him or her-self directed when he or she was capable. In those cases where the patient has never been capable the task is to try to determine the person’s best interests. Substitute decision-makers often feel this as a great burden and sometimes carry the burden of their decisions for the rest of their lives. Caregivers can help here as they describe, in realistic terms, what lies ahead and can help family members to see that under many circumstances the loving and respectful thing to do is to honour the patient’s wishes and allow a natural death to occur. (And this will need a further post too.)
Involuntary active and passive euthanasia
These would occur, either when a treatment was not offered or discontinued, when a patient expressly asked for it to be initiated or continued (passive involuntary) or when an action was taken to end a patient’s life, again against the expressed wishes of the person concerned (active involuntary.) It is difficult to imagine a situation of active involuntary euthanasia that would not be murder, so let’s leave those and look instead at passive involuntary euthanasia. Does this happen?
This issue is one of the most challenging in contemporary Canadian healthcare and our discussion will take us into a host of other areas, including resource allocation in times of scarcity, best interests and the concept of medical futility, all of which will require their own detailed posts and discussion. Let’s imagine a situation like this: (and let’s make it the easiest and clearest type of case.) Imagine that I am the patient and that, right now, I am clearly capable of making my own decisions. Imagine that I tell my Power of Attorney – and all of my health care team (and my lawyer too – why not) that I believe that more life is better than less. My personal conviction, let us imagine, is that any form of life is to be preferred to death, so, I demand that I be kept alive, for as long as is technically possible. I do not care about quality of life – I do not care about the indignities my body might suffer, nor the pain that I might need to endure, I demand that my body be kept alive, using whatever means medicine may have available – for as long as possible. Is my health care team bound to follow my wishes? If you ask this question of medical professionals – and I do, you get mixed answers; there is uncertainty in contemporary practice – uncertainty which has not been settled by the Courts (another question would be whether the courts would be the right place to settle such questions.) The nearest case is that of Samuel Golubchuk who died in 2008 in Manitoba before a decision was rendered in the courts. His family had sought continued treatment and the physicians caring for him had wished to withdraw treatment, but let us get back to our scenario. Let us imagine I now fall ill, am no longer able to speak for myself and I require – in order to keep my body alive, dramatic intervention, resuscitation, ventilator support and so on. Let us imagine that the very best medical evidence is that there is no reasonable prospect of any sort of recovery, and I will be unable to interact with the outside world, be aware of my surroundings – indeed I will be unaware of myself between now and the time I die. My underlying disease will inevitably kill me, in say 6 months, and all the interventions can do at this stage is keep my body alive for a little longer as we wait for the inevitable. Is the team required to, for example resuscitate should I arrest? or provide ventilator support, or insert a feeding tube?
Let’s look at the general issues. We mentioned earlier the dynamic of health care decision-making. Generally, I present with the illness and symptoms, the physician and care-giving team diagnose and propose the appropriate treatment and I, as the patient get to choose from amongst those treatments or to refuse all of them. Resuscitation is considered a treatment. (Incidentally, according the Canadian Medical Association’s Joint Statement on Resuscitative Interventions, which you might find useful if you are developing policy in this area (http://www.cma.ca/index.cfm/ci_id/33236/la_id/1.htm) resuscitation is a treatment which can be inappropriate or futile.) Any treatment may or may not be appropriate or advisable. It is the role of the physician therefore to determine if an attempt at resuscitation would be appropriate in any particular case. A physician could determine that, in the case I have described above, a resuscitation attempt, for me, would be inappropriate, and so should not be offered or performed. Can I, or my Power of Attorney, insist that it be performed? The answer ought to be no. The professional medical judgment that a particular treatment is futile, or inadvisable and so ought not to be offered, should be just that, a professional, expert judgment. However, the reality is that few physicians would insist on writing what is sometimes called a `medical DNR` without the patient`s or substitute decision-maker`s consent. Physicians are often unwilling to go through the protracted arguments and disputes that may ensue. This seems to leave the physicians at the mercy of the patient who demands care that they deem to inappropriate or futile. We will look in detail in another post at the concepts of medical futility and inappropriateness in far more detail, but let us content ourselves here with just one distinction. The concept of `medial futility` is extremely powerful, but its application is quite limited. The judgment that a treatment is medically futile is an expert medical judgment, and so falls within the domain of the experts – in this case physicians. It is a judgment that a particular treatment cannot work to bring about the effect for which it is intended. It is not a judgment that the treatment would be of no benefit to, ``or is not good for,`` the patient. (The determination of whether or not a treatment `benefits` me, or is good for me, should be mine.) That is, resuscitation in the case that we have described, may have the effect that it would keep my body alive a little longer. As such the treatment is not `medically futile.` It succeeds in doing what it is intended to do – restart the heart and perhaps with ventilator and other support get oxygen and blood flowing. I may be comatose, unable ever to know that this event has occurred, I may not know that I am still alive but whether this is a `benefit` to me is up to me – and I have already indicated, when I was capable, that I viewed life under these conditions as worth having, as a benefit to me. There is another type of judgment – one that often gets buried in discussions of `futility` and the inadvisability or inappropriateness of treatment – and that is the judgment that a treatment ought not to be offered because either it is somehow not cost effective, or because it is a benefit that we – the community, do not wish to fund. So, it could be said, that when resources are scarce (and incidentally, they are always scarce) we should not fund the ``benefit`` of keeping bodies alive when the person concerned has no prospect of recovery and when he or she has no prospect of interacting with his or her environment – indeed when the person has no sense of `self` at all. Now these judgments get made all the time – sometimes explicitly (for instance through the use of less costly generics in the place of brand name drugs, or cheaper prosthetic devices instead of the `Cadillac` version (maybe Cadillac won`t do here any more – perhaps Rolls Royce) but often not explicitly, for instance, when issues of cost-effectiveness or low benefit get described as medical decisions. The difficult question is: Who should decide these issues and how?
So, we haven’t really answered the question of involuntary passive euthanasia. I am inclined to think that it occurs, and indeed that it needs to occur, on two quite different grounds. In the first case physicians ought to be in the position to make judgments that a treatment is medically futile – that it cannot bring about the effect for which it is intended. In these cases physicians ought not to offer futile treatments and patients ought not to be able to substitute their judgment of medical benefit for their physicians. (I should stress the necessity of a good process here. The physician should be acting within the standards of good practice and he or she may well consult with colleagues, interdisciplinary teams, ethics teams and so on and document that discussion carefully.) In those cases health care facilities and management ought to support physicians in these types of decision. However, these situations are relatively rare. Far more common, given an environment of scarce resources are the situations where there are limits on the treatments that may be made available, where those limits are caused by scarcity, low probability of benefit, limited benefit or a disagreement between the patient and the community about whether the outcome constitutes a benefit at all. But who should decide those cases? Not, I would say, the physician at the bedside. As a community we need to determine our health care priorities and we need to be prepared to stick behind those priorities – which in turn means limiting the freedom of both patients to choose the treatments they might want and physicians to prescribe treatments the community has decided not to fund. But that requires a proper, open, community-wide discussion. (And another post.)
Well, let’s go back to the beginning and run through some of the classic positions and arguments on the topic. First, a word about words. Some words have value connotations or associations – they carry their evaluative force right on the surface. Other words can be used without any particular value connotations or associations. So, for instance, the word “murder” carries its values on the surface. There are no “good” murders. To call an act a murder is to identify it as a wrongful killing. But not all killings are murders and not all killings are wrongful. So, for instance, a killing in self-defence would be viewed by many people as morally justifiable, as would be a killing of a combatant on the battlefield at a time of war. As we explore the ethical acceptability, or otherwise, of “euthanasia” we have to be careful how we use the words. Some people would associate a value connotation with the word “euthanasia,” typically a negative connotation. Others view the word “euthanasia” as value neutral. What we want to do is to explore the ethical acceptability of actions or practices, rather than the ethical connotations of a word. We want to make up our minds if it should be ethically acceptable for a physician (or anyone else for that matter) to deliberately deliver a lethal dose in order to end a life, or to choose not to start a feeding tube to prolong a life, or to refrain from performing a life-extending procedure, not to determine if the word “euthanasia” has ethical associations one way or the other. So, for the time being I will use the word “euthanasia” as if it was value-neutral, and will look more closely at particular actions to make our ethical evaluations. So, let’s start with some distinctions so that we can keep our ideas straight and our terminology clear.
Active and passive euthanasia.
Active euthanasia refers to deliberately taking a step, or performing an action that will cause the death of another person.
Passive euthanasia refers to refraining to take a step or perform an action that would save or prolong a life.
Voluntary, non-voluntary and involuntary euthanasia.
The voluntary/non-voluntary distinction has itself been further refined and there is some confusion and inconsistency in the way the words are used – I will use them like this:
Voluntary euthanasia occurs when a capable person chooses or decides to take a step or perform an action that will cause his or her death, or to refrain from taking an action that would prolong his or her life.
Non-voluntary euthanasia occurs when the person is not capable of making his or her own choice.
Involuntary euthanasia occurs against the express wishes of the person concerned.
So we can see how the categories combine. There can be Voluntary Active Euthanasia, Voluntary Passive Euthanasia, Non-Voluntary Active Euthanasia, Non-Voluntary Passive Euthanasia, Involuntary Active Euthanasia, and Involuntary Passive Euthanasia. We will deal with each of them in turn, but before we do that there is one further preliminary step. I will adopt a general stance in favour of freedom. That is, I believe that in an open and democratic society the default position should be one of freedom. We should be able to do... whatever, unless there are good reasons why we should not. That is, I will assume that it is those who would limit freedom who need to show why freedom should be limited, rather than those who would perform whatever act we might be discussing to show why they should be permitted to do it. So to apply that idea to euthanasia, it is up to those who would prevent people from practising any particular form of euthanasia to show why it should be prohibited, rather than up to those who would perform the act to show why it should be allowed.
Voluntary Active Euthanasia
In Canada it is not against the law to take one’s own life, it is not illegal to commit suicide. What is contrary to the criminal code is to counsel or aid someone in committing suicide. (Section 241 of the Criminal Code of Canada, C46) In Canada, what is often called assisted suicide – or physician assisted suicide is contrary to the criminal code. So, if the person does it him or her-self it is within the law, if she or he needs assistance, rendering that assistance would be unlawful. Now, answering a question about the legality of an action is not the same thing as asking about its ethical acceptability, but here the discussion becomes intensely personal. Can we put ourselves in another’s situation, feel his pain, or know her prospects? Can we stand outside and say – Aha.. intractable illness, only expected to live a month, severe and unremitting pain – in this circumstance it would be ethically acceptable for this person to choose not to continue with a life that is full of suffering without prospect of relief – but here in this other situation for this other person the pain is not so bad, the prospects a little better, for this person he should choose to live and should try to make something meaningful of his suffering. The point I am trying to make here is that if people are entitled to choose how they live their lives, if they are entitled to choose how they make those lives meaningful – then we are stuck with people being able to choose when their lives lack meaning or to determine that life under the conditions available is not – to the person concerned, worth having. So far we have been looking at the issue from the perspective of the person concerned. We might, as friends or professionals, support a friend or a client as he or she explores the options available and seeks to make the best choice that she can – but we are not directly involved – we are not the decision-maker and we are not the agent that puts any decision into practice. The situation is different, in a community where assisted, or physician assisted suicide is legal. First, under these conditions there is some sort of legal process established that protects participants from prosecution if certain conditions are met, and second someone, other than the patient or client is involved in performing an act that ends a life. In a community like this the community has sanctioned the taking of a life under certain conditions. The community is complicit. Many of the arguments against permitting assisted, or physician-assisted suicide hinge on exactly this idea. What does it mean for a community to allow its citizens to take the lives of other members of the community? Has the community failed in providing good supportive palliative care, or adequate pain relief, or the conditions that allow people to live meaningful lives? Has a community that allows assisted suicide somehow failed to adequately respect human life as such? Then there are concerns about the people called upon to assist the dying person. Would permitting, for example, physicians to assist in acts of suicide place intolerable ethical burdens on those physicians? Would they become somehow coarsened to humanity and human suffering? (Or does that coarsening occur when physicians are forced to assist in extending a patient’s life when that life has become too great a burden for the person to bear?) This is the heart of the euthanasia debate – what sort of community do we want? Are we, as a community, prepared to be complicit, as we honour an individual’s choice (or right) to live – or end, his life as he sees fit? Or will we, as a community, turn away as people in their own intractable pain cry out for mercy?
Voluntary passive euthanasia
In Canada this is done all of the time. Any time a person refuses a potentially life-sustaining treatment, any time a person decides to forego a resuscitation attempt, any time an individual decides not to start a feeding tube we are practising voluntary passive euthanasia. In Ontario the right to refuse a treatment, including a life sustaining treatment is guaranteed in the Health Care Consent Act. (http://www.e-laws.gov.on.ca/html/statutes/english/elaws_statutes_96h02_e.htm) Section 10:
No treatment without consent
10. (1) A health practitioner who proposes a treatment for a person shall not administer the treatment, and shall take reasonable steps to ensure that it is not administered, unless,
(a) he or she is of the opinion that the person is capable with respect to the treatment, and the person has given consent; or
(b) he or she is of the opinion that the person is incapable with respect to the treatment, and the person’s substitute decision-maker has given consent on the person’s behalf in accordance with this Act. 1996, c. 2, Sched. A, s. 10 (1).
This is quite clear, the capable patient is entitled to refuse a treatment and the health care practitioner is required to honour that refusal. We can look at this in terms of rights and bodily integrity. The basic idea is that a person is entitled to say what happens to his or her body. My bodily integrity is mine to control. In the simplest possible terms I am entitled to say who touches me, how and for what purpose. (I can lose that “right” for instance if I am about to harm someone else, but generally I am entitled to say what happens to me. (Look what would be the case if this were not so. If someone else could use my body for his or her own purposes then I would be being treated as some sort of a thing – not a human agent with my own will and person. (This idea probably has its best expression in the writings of the philosopher Emmanuel Kant, but that could be the subject of a post another day.))
We should return to our word about words. In my travels around the hospitals and health-care facilities I work with I have often been told (and indeed often with some indignation) “We don’t practice euthanasia...” The person talking is normally thinking of active euthanasia and usually has ascribed negative value connotations to the word “euthanasia.” If you then ask if he or she would honour a capable patient’s refusal of a treatment then, of course the answer is always yes.
Non-voluntary active and passive euthanasia
“Non-voluntary” expresses the idea that the person is not capable of expressing his or her views and is not in a position to say what he or she would want. A person could be in this situation for a variety of reasons. The crucial distinction is between those who have never been capable of expressing their wishes concerning treatment and those that were once capable. In the case of people who were once capable a variety of mechanisms exist to allow the person to carry his or her wishes, expressed when he or she is capable, forward into a time when he or she is not. In written form these can be called “Advance directives,” “Living wills,” or sometimes “Odysseus contracts.” The general principle is the same. The person tries to articulate as clearly as possible how he or she would wish to be treated at some time in the future when he or she is no longer able to speak for him or her-self. The second similar, but slightly different, approach is to name a person to act on your behalf at a time when you become incapable. In Ontario this person can be named as “Power of Attorney” (either for finances or personal care, we are interested here in the Power of Attorney for Personal Care.) You give the power of attorney for personal care the authority to make the health care decisions that you would have made yourself if you were capable.
Advance directives and Power of Attorney for Personal Care
There is a great deal that is worth saying on this topic. In the first instance let me support both advance directives and the formal creation of a power of attorney for personal care. If you want to have your affairs in order and if you want to minimize your burden on your loved ones should you become incapable of speaking for yourself you really should have thought these things through. The purpose of both approaches is the same; it is to allow you to project your will now into a future when you are not able to speak for yourself. In an advance directive you specify the sorts of treatments you would not want under conditions that you also specify. And then your substitute decision-maker and indeed your health care team should honour your refusals of treatment. I say “should” here because there is an important wrinkle to advance directives and the direction they provide to your substitute decision-maker. Your substitute decision-maker is charged with following your instructions, or where no instructions exist, your values. However, the substitute decision-maker has to determine whether, or how, the instructions that you previously provided fit the actual circumstances you are faced with. To take a really simple example, suppose I told my substitute decision-maker or power of attorney: “No tubes.” Or, even more precisely, “I would not want a ventilator, and I don’t want tubes stuck in me.” What would happen if I was in an accident, or suffered from an illness where the best medical evidence is that with a short course of treatment, a treatment that would include intubation and ventilator support, I would be able to return to my previous way of life? What should my substitute decision-maker do? The general point is that it is very difficult, perhaps impossible to specify in advance all of the things that might happen and then to identify, again in advance, what I would want to happen under those circumstances. This means that the substitute decision-maker will always be in a position of having to work out what I meant, what I would have wanted had I known that I would be faced with this exact set of circumstances. To go back to our previous example, my substitute decision-maker should be able to work out that what I meant when I said “no tubes” is that I would not wish to spend the rest of my life on a ventilator or with a feeding tube, but if that sort of intervention was necessary, and highly temporary, leading to what I would view as a full recovery then I would have wanted it. The key piece for the substitute decision-maker is to try to honour the person that I am, to respect me and my values and to work out – from my life as I have lived it and from the instructions I have given, what I would want to happen.
Those who have never been able to speak for themselves.
The situation is different for people who either through incapacity, youth, or mental development have never been “capable” of consenting, or otherwise to medical treatment. For these people the guide of “previously expressed wishes” is not available to help a substitute decision-maker decide what to do, rather the substitute decision-maker has to use some sort of test of “best interests.” Now “best interests” will have to be the subject of another post because the overall topic is more complicated than it at first appears. The general issue is that for capable adults we pretty much allow the person concerned to self-define what would count as his or her best interests. That is, the capable individual creates or establishes his or her best interests. Best interests are defined from the inside. But that approach is not available for people who have never been capable. For those people the substitute decision-maker and care-giver are required to try to determine “best interests’ from the outside. This makes decisions about, for instance, end-of-life care extremely burdensome for those who have to make the decisions solely on their best evaluation of another person’s “best interests.” Here perhaps the best practical advice is to make such decisions collaboratively. We do better if we share the burden of decision-making with those who know the person well, those who are experienced in the care of people with the relevant illness or disease, and those who genuinely care about the person’s complete well-being.
So, to go back to our categories, passive non-voluntary euthanasia happens often. It occurs whenever a power of attorney for personal care, or substitute decision-maker makes the decision to forego or discontinue a possibly life-extending treatment or intervention. As we have noted, the role of the substitute decision-maker or power of attorney is to do what the patient him or her-self directed when he or she was capable. In those cases where the patient has never been capable the task is to try to determine the person’s best interests. Substitute decision-makers often feel this as a great burden and sometimes carry the burden of their decisions for the rest of their lives. Caregivers can help here as they describe, in realistic terms, what lies ahead and can help family members to see that under many circumstances the loving and respectful thing to do is to honour the patient’s wishes and allow a natural death to occur. (And this will need a further post too.)
Involuntary active and passive euthanasia
These would occur, either when a treatment was not offered or discontinued, when a patient expressly asked for it to be initiated or continued (passive involuntary) or when an action was taken to end a patient’s life, again against the expressed wishes of the person concerned (active involuntary.) It is difficult to imagine a situation of active involuntary euthanasia that would not be murder, so let’s leave those and look instead at passive involuntary euthanasia. Does this happen?
This issue is one of the most challenging in contemporary Canadian healthcare and our discussion will take us into a host of other areas, including resource allocation in times of scarcity, best interests and the concept of medical futility, all of which will require their own detailed posts and discussion. Let’s imagine a situation like this: (and let’s make it the easiest and clearest type of case.) Imagine that I am the patient and that, right now, I am clearly capable of making my own decisions. Imagine that I tell my Power of Attorney – and all of my health care team (and my lawyer too – why not) that I believe that more life is better than less. My personal conviction, let us imagine, is that any form of life is to be preferred to death, so, I demand that I be kept alive, for as long as is technically possible. I do not care about quality of life – I do not care about the indignities my body might suffer, nor the pain that I might need to endure, I demand that my body be kept alive, using whatever means medicine may have available – for as long as possible. Is my health care team bound to follow my wishes? If you ask this question of medical professionals – and I do, you get mixed answers; there is uncertainty in contemporary practice – uncertainty which has not been settled by the Courts (another question would be whether the courts would be the right place to settle such questions.) The nearest case is that of Samuel Golubchuk who died in 2008 in Manitoba before a decision was rendered in the courts. His family had sought continued treatment and the physicians caring for him had wished to withdraw treatment, but let us get back to our scenario. Let us imagine I now fall ill, am no longer able to speak for myself and I require – in order to keep my body alive, dramatic intervention, resuscitation, ventilator support and so on. Let us imagine that the very best medical evidence is that there is no reasonable prospect of any sort of recovery, and I will be unable to interact with the outside world, be aware of my surroundings – indeed I will be unaware of myself between now and the time I die. My underlying disease will inevitably kill me, in say 6 months, and all the interventions can do at this stage is keep my body alive for a little longer as we wait for the inevitable. Is the team required to, for example resuscitate should I arrest? or provide ventilator support, or insert a feeding tube?
Let’s look at the general issues. We mentioned earlier the dynamic of health care decision-making. Generally, I present with the illness and symptoms, the physician and care-giving team diagnose and propose the appropriate treatment and I, as the patient get to choose from amongst those treatments or to refuse all of them. Resuscitation is considered a treatment. (Incidentally, according the Canadian Medical Association’s Joint Statement on Resuscitative Interventions, which you might find useful if you are developing policy in this area (http://www.cma.ca/index.cfm/ci_id/33236/la_id/1.htm) resuscitation is a treatment which can be inappropriate or futile.) Any treatment may or may not be appropriate or advisable. It is the role of the physician therefore to determine if an attempt at resuscitation would be appropriate in any particular case. A physician could determine that, in the case I have described above, a resuscitation attempt, for me, would be inappropriate, and so should not be offered or performed. Can I, or my Power of Attorney, insist that it be performed? The answer ought to be no. The professional medical judgment that a particular treatment is futile, or inadvisable and so ought not to be offered, should be just that, a professional, expert judgment. However, the reality is that few physicians would insist on writing what is sometimes called a `medical DNR` without the patient`s or substitute decision-maker`s consent. Physicians are often unwilling to go through the protracted arguments and disputes that may ensue. This seems to leave the physicians at the mercy of the patient who demands care that they deem to inappropriate or futile. We will look in detail in another post at the concepts of medical futility and inappropriateness in far more detail, but let us content ourselves here with just one distinction. The concept of `medial futility` is extremely powerful, but its application is quite limited. The judgment that a treatment is medically futile is an expert medical judgment, and so falls within the domain of the experts – in this case physicians. It is a judgment that a particular treatment cannot work to bring about the effect for which it is intended. It is not a judgment that the treatment would be of no benefit to, ``or is not good for,`` the patient. (The determination of whether or not a treatment `benefits` me, or is good for me, should be mine.) That is, resuscitation in the case that we have described, may have the effect that it would keep my body alive a little longer. As such the treatment is not `medically futile.` It succeeds in doing what it is intended to do – restart the heart and perhaps with ventilator and other support get oxygen and blood flowing. I may be comatose, unable ever to know that this event has occurred, I may not know that I am still alive but whether this is a `benefit` to me is up to me – and I have already indicated, when I was capable, that I viewed life under these conditions as worth having, as a benefit to me. There is another type of judgment – one that often gets buried in discussions of `futility` and the inadvisability or inappropriateness of treatment – and that is the judgment that a treatment ought not to be offered because either it is somehow not cost effective, or because it is a benefit that we – the community, do not wish to fund. So, it could be said, that when resources are scarce (and incidentally, they are always scarce) we should not fund the ``benefit`` of keeping bodies alive when the person concerned has no prospect of recovery and when he or she has no prospect of interacting with his or her environment – indeed when the person has no sense of `self` at all. Now these judgments get made all the time – sometimes explicitly (for instance through the use of less costly generics in the place of brand name drugs, or cheaper prosthetic devices instead of the `Cadillac` version (maybe Cadillac won`t do here any more – perhaps Rolls Royce) but often not explicitly, for instance, when issues of cost-effectiveness or low benefit get described as medical decisions. The difficult question is: Who should decide these issues and how?
So, we haven’t really answered the question of involuntary passive euthanasia. I am inclined to think that it occurs, and indeed that it needs to occur, on two quite different grounds. In the first case physicians ought to be in the position to make judgments that a treatment is medically futile – that it cannot bring about the effect for which it is intended. In these cases physicians ought not to offer futile treatments and patients ought not to be able to substitute their judgment of medical benefit for their physicians. (I should stress the necessity of a good process here. The physician should be acting within the standards of good practice and he or she may well consult with colleagues, interdisciplinary teams, ethics teams and so on and document that discussion carefully.) In those cases health care facilities and management ought to support physicians in these types of decision. However, these situations are relatively rare. Far more common, given an environment of scarce resources are the situations where there are limits on the treatments that may be made available, where those limits are caused by scarcity, low probability of benefit, limited benefit or a disagreement between the patient and the community about whether the outcome constitutes a benefit at all. But who should decide those cases? Not, I would say, the physician at the bedside. As a community we need to determine our health care priorities and we need to be prepared to stick behind those priorities – which in turn means limiting the freedom of both patients to choose the treatments they might want and physicians to prescribe treatments the community has decided not to fund. But that requires a proper, open, community-wide discussion. (And another post.)
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