Compassion and Conflict

Compassion and conflict.

Compassion is a virtue much touted in health care.  Many organizations and individuals would claim compassion as one of their key values.  Good thing too – compassion is the sympathetic feeling of another’s pain and suffering. Compassion requires us to put ourselves in another’s position and to see and feel the world as he or she does.  Compassion requires us to see others as persons and to treat them accordingly.  But what happens when compassion runs into conflict with other, deeply held, values?

What does an organization – or an individual, do then?

For organizations, “accountability, or stewardship” have always been values in potential conflict with compassion.  Accountability and stewardship are values of fairness, and resource management for organizations.  A health care organization ought to make the most efficient use of its resources as possible.  (“Efficient,” of course, is a loaded term, and might mean a variety of things, but at its heart is something like getting the best health care results possible for the available resources.)  But accountability and stewardship require declining to do certain things or provide certain services.  Stewardship and accountability require saying no to patient or community requests that, for example, have a low probability of success, or that bring minimal improvements to health and well-being.  But that, of course, may well mean saying no to someone, begging for hope, a person in the extremity of his or her need, to whom one’s heart goes out in compassion.  What should the “good” administrator or organization do?  

Medical Aid in Dying (MAID) poses a new challenge in compassion for both organizations – and individuals.  It is clear, that for many people seeking MAID this is a last desperate request for an end to intolerable suffering.  From the perspective of the person concerned his or her suffering is intolerable and cannot be relieved by any method that person him or herself can accept.   For such a person death may be the choice as the “least worst” option.  Anyone in such a situation demands our compassion.  But what happens if that demand on compassion conflicts with, for instance, the religious beliefs of the faith-based, health care organization, or an organization’s foundational professional commitments (some understandings of hospice-based palliative care)? Is it compassionate to transfer a dying patient out of a faith-based hospital, or out of a Hospice, to receive medical aid in dying at another facility?

The same moral dilemma exists for individuals.  While a person’s personal and professional moral or ethical commitments may well have assumed “Do no harm,” Medical Aid in Dying poses a compassionate challenge to exactly what is meant by “harm.”  The patient seeking Medical Aid In Dying is asking us to understand that from his or her perspective it is continued life that is the harm, and death is the compassionately granted relief. 

As usual, there is not an answer here – just another example of the complexity of our moral lives.  

Conscientious objection and referral: words, principles and compromise.

On the one hand:

The Parliament of Canada recognizes the autonomy of persons who have a grievous and irremediable medical condition that causes them enduring and intolerable suffering and who wish to seek medical assistance in dying;

And

The Government of Canada has committed to uphold the principles set out in the Canada Health Act — public administration, comprehensiveness, universality, portability and accessibility — with respect to medical assistance in dying;

But on the other hand:

everyone has freedom of conscience and religion under section 2 of the Canadian Charter of Rights and Freedoms;

And

nothing in this Act affects the guarantee of freedom of conscience and religion;

Preamble to Bill C-14

http://laws-lois.justice.gc.ca/eng/AnnualStatutes/2016_3/FullText.html

Bill C-14 Section 241.2(9) goes on to say:

 (9) For greater certainty, nothing in this section compels an individual to provide or assist in providing medical assistance in dying.

In Medical Assistance in Dying, Health Canada puts it this way:

Protecting the right of providers to act according to their beliefs and values

Not all health care providers will be comfortable with giving or helping to provide medical assistance in dying. The practice may not be consistent with a provider's beliefs and values. The legislation does not force any person to provide or help to provide medical assistance in dying.

http://www.healthycanadians.gc.ca/health-system-systeme-sante/services/end-life-care-soins-fin-vie/medical-assistance-dying-aide-medicale-mourir-eng.php

Patients are entitled to have timely access to legal medical services.  Physicians or nurse practitioners act as gatekeepers to the medical system, but they cannot be compelled to provide or assist to provide, medical aid in dying.  What are the professional ethical expectations of physicians and nurse practitioners? What should physicians and nurse practitioners be “compelled” to do? 

Leading players in medical professional associations say different things – or at least they appear to.

CMA Principles-Based Recommendations for a Canadian Approach to Assisted Dying https://www.cma.ca/Assets/assets-library/document/en/advocacy/cma-framework_assisted-dying_final-jan2016-edited-20160412.pdf

CPSO Policy on Medical assistance in Dying http://www.cpso.on.ca/Policies-Publications/Policy/Physician-Assisted-Death

5.2 Conscientious objection by a physician CMA’s position on conscientious objection aims to ensure two equally legitimate considerations: (1) protection of physicians’ freedom of conscience (or moral integrity) in a way that respects differences of conscience and (2) effective patient access to a legally permissible medical service.  Physicians are not obligated to fulfill a patient’s request for assistance in dying but all physicians are obligated to respond to a patient’s request. This means that physicians who choose not to provide or participate in assisted dying (1) are not required to provide it or to participate in it or to refer the patient to a physician or a medical administrator who will provide assisted dying to the patient and (2) are required to fulfill their duty of non-abandonment by responding to a patient’s request for assistance in dying. There should be no discrimination against a physician who chooses not to provide or participate in assisted dying.  Physicians are obligated to respond in a timely fashion to a patient’s request for assistance in dying. This means that physicians are obligated to, regardless of their beliefs: i. provide the patient with complete information on all options available, including assisted dying; ii. advise the patient on how to access any separate central information, counselling and referral service; and iii. transfer the patient to another physician or another institution if the patient requests it for the assessment and treatment of the patient’s medical condition and, if the patients meets the eligibility criteria, provision of assistance in dying.  Physicians are expected to make available relevant medical records (i.e., diagnosis, pathology, treatment and consults) to the attending physician when authorized by the patient to do so; or, if the patient requests a transfer of care to another physician and the patient is being transferred to the care of another physician, physicians are expected to transfer the patient’s chart to the new physician when authorized by the patient to do so.  Physicians are expected to act in good faith, never abandon or discriminate against a patient requesting assistance in dying, and not impede or block access to a request for assistance in dying. Physicians should inform their patients of the fact and implications of their conscientious objection. No physician may make a commitment not to seek assisted dying a condition of acceptance or retention of a patient.

Conscientious Objection The federal legislation does not address how conscientious objections of physicians, nurse practitioners, or other healthcare providers are to be managed. In the Carter case, the Supreme Court of Canada noted that the Charter rights of patients and physicians would have to be reconciled. Physicians who have a conscientious objection to providing medical assistance in dying are directed to comply with the College’s expectations for conscientious objections in general, set out in the Professional Obligations and Human Rights policy.    These expectations are as follows: Where a physician declines to provide medical assistance in dying for reasons of conscience or religion, the physician must do so in a manner that respects patient dignity. Physicians must not impede access to medical assistance in dying, even if it conflicts with their conscience or religious beliefs. The physician must communicate his/her objection to medical assistance in dying to the patient directly and with sensitivity.  The physician must inform the patient that the objection is due to personal and not clinical reasons.  In the course of communicating an objection, physicians must not express personal moral judgments about the beliefs, lifestyle, identity or characteristics of the patient. In order to uphold patient autonomy and facilitate the decision-making process, physicians must provide the patient with information about all options for care that may be available or appropriate to meet the patient’s clinical needs, concerns, and/or wishes.  Physicians must not withhold information about the existence of any procedure or treatment because it conflicts with their conscience or religious beliefs. Where a physician declines to provide medical assistance in dying for reasons of conscience or religion, the physician must not abandon the patient. An effective referral must be provided. An effective referral means a referral made in good faith, to a non-objecting, available, and accessible physician, nurse practitioner or agency. The referral must be made in a timely manner to allow the patient to access medical assistance in dying. Patients must not be exposed to adverse clinical outcomes due to delayed referrals.10,11 The federal legislation does not compel physicians to provide or assist in providing medical assistance in dying. For clarity, the College does not consider providing the patient with an ‘effective referral’ as ‘assisting’ in providing medical assistance in dying.

Let us start with the points of agreement.

Physicians must not impede or block access to medical aid in dying for a patient who requests it.  A physician must not abandon his or her patient.

A physician must respond to a patient’s request for medical aid in dying.  A physician must communicate all options for care that may be available or appropriate (including assisted dying.)  A patient must be informed of the availability of a central information or referral agency.  A physician must inform the patient of his or her conscientious objection to providing medical aid in dying. 

The CMA requires that a physician transfer the patient if the patient so requests.  The CMA explanation of “transfer” continues: “for the assessment and treatment of the patient’s medical condition and, if the patients meets the eligibility criteria, provision of assistance in dying.”  Given that a physician cannot abandon a patient, and given also that physicians cannot make seeking MAID a condition of retention what is the difference between “transferring” and “referring?”   

The principal issue of contention is the duty to make an “effective referral.”  To the casual observer the points of agreement might seem to make the issue of “effective referral” a bit of a red herring.  If a physician cannot abandon her patient, and must inform the patient of the availability of medical aid in dying and provide information about a referral agency or process, and transfer the care of the patient for assessment and provision of MAID why does it matter whether any of that is called “referral?”

The article goes on to say: “For doctors and nurse practitioners, a referral amounts to an endorsement of another physician’s services, and suggests support for the medical intervention.”

The CPSO has explained and expanded its conception of “effective referral” in a Fact Sheet entitled “Ensuring Access to Care – Effective Referral.”

What is an “Effective Referral”

A physician makes an effective referral when he or she takes positive action

to ensure the patient is connected in a timely manner to another physician,

health-care provider, or agency who is non-objecting, accessible and available

to the patient.

Objective: Ensuring Access to Care,

Respecting Patient Autonomy

An effective referral does not guarantee a patient will receive a treatment, or signal that the objecting physician endorses or supports the treatment. It ensures access

to care and demonstrates respect for patient autonomy.

The CMA requires a physician to “respond,” or “take action” in the language of the CPSO.  That response includes proving information about the existence, availability and contact information of another physician or referral agency who does not object to providing medical aid in dying.

There are a number of crucial points at issue here:

          What is it to “assist to provide?”

          What is the difference between responding by providing information about a central referral agency, transferring a patient for assessment and, if eligible, provision of a procedure, and “referring a patient for the assessment and, if eligible, provision of a procedure?”

Does providing information or referral or transfer, imply endorsement of medical aid in dying?

Who gets to decide on any of these issues?

If there is a conflict between the rights of patients and the rights of physicians     can these be reconciled?

Assist to provide

In its obvious sense to assist someone is to help or aid that person in the performance of a task or in pursuit of an objective.  The legislation concerns the provision of medical aid in dying so let us take the actual provision of “medical assistance in dying” as the objective or task that no-one is required to perform or assist in providing.  Medical aid in dying is defined in the legislation as: 

medical assistance in dying means

·        (a) the administering by a medical practitioner or nurse practitioner of a substance to a person, at their request, that causes their death; or

·        (b) the prescribing or providing by a medical practitioner or nurse practitioner of a substance to a person, at their request, so that they may self-administer the substance and in doing so cause their own death. (aide médicale à mourir)

Medical assistance in dying is the actual administration of the lethal substance to the patient, or the prescription of a substance that the patient may self-administer to cause his or her death.  Let us just concentrate on the first case – where the medical practitioner administers the substance.  Clearly, under the legislation no medical practitioner can be compelled to administer that lethal substance.  Who has “assisted?” And here we have to broaden the scope of the discussion to include those engaged in the provision of health care who are not physicians or nurse practitioners.  A nurse may well have provided a range of standard nursing care services to that patient before the administration of the lethal substance.  If that nurse has provided comfort care to that patient before the provision of the lethal injection – perhaps during the expected 10 day waiting period has he or she “assisted?”  That seems implausible.  The care being provided through that time is no different from the care the patient would ordinarily have received and that care is not part of the preparation for the administration of the lethal substance.  What about starting the IV line that will later be used to administer the lethal substance?  Again, there are different possibilities, if the nurse is asked to start the IV line where that line is for the express purpose of administering the lethal substance, that seems like “assisting” in the provision of medical aid in dying.  If, however the line is used to administer a variety of other medications and only subsequently is used for the administration of the lethal substance, that does not appear to be “assisting” in the provision of medical aid in dying. 

What about other professionals who may be involved?  Does the Social Worker who counsels and supports both the patient and his or her family “assist” in the provision of medical assistance in dying?  What about the non-professional staff?  Would a housekeeper who knows that he or she is preparing a room where medical assistance in dying is to be performed be entitled to refuse the assignment on the grounds that it would be “assisting” in the provision of medical aid in dying?

Pharmacists are mentioned in the legislation and thus constitute a special case.  Pharmacists are entitled to be notified that the medications being ordered are for the purpose of the provision of medical assistance in dying.  The most obvious reason for this would be to permit the Pharmacist  the opportunity to object to providing that service on the grounds of conscience.  Which in turn means that a Pharmacist who supplies the medication, knowing its purpose, would be “assisting” in the provision of medical assistance in dying.   It is not clear if this case helps illuminate the Social work and Housekeeping situations.  In the case of the Pharmacist those medications would not be ordered, in those combinations or quantities for any other purpose that provision of medical assistance in dying.  The medications are for medical assistance in dying so providing the medications constitutes assistance.  In the cases of both the Social Worker and the Housekeeper their services would be required in the same way whatever course of action the patient undertakes.

Two physicians (or Nurse Practitioners) are required to agree that the patient meets the conditions to receive medical assistance in dying.  It is expected that one of those Physicians (NPs) will administer the lethal substance.  What about the other Physician or NP?  Does he or she “assist?” The Physician (NP) concerned is being asked to evaluate a patient on the basis of a set of criteria.  Either the patient has a grievous and incurable illness, is in an advanced state of decline in capacity,  has a natural death that is reasonably foreseeable, is capable of making health care decisions, etc. or he or she is not.  If the patient does meet those conditions then that patient may wish to choose the legally available option of medical assistance in dying.  But of course he or she may well not.  Data from Oregon where Physician Assisted Suicide has been legal for 10 years shows that around a quarter to a third of patients who are eligible for – and receive -- a prescription to self-administer a lethal medication do not do so.    (https://public.health.oregon.gov/ProviderPartnerResources/EvaluationResearch/DeathwithDignityAct/Documents/year16.pdf) 

It seems pretty intuitively obvious that a person who provides a second opinion on a patient’s eligibility for medical assistance in dying is “assisting,” and certainly many people would feel that way, but this is less than clear cut.  The Physician (NP) is providing an opinion on eligibility, not recommending any particular course of action.  It is true that that opinion is a necessary condition for the provision of medical assistance in dying, but not all of the necessary conditions would count as “assistance.” 

Before we go further back up the chain of events that culminates in the actual provision of medical assistance in dying let us look at the “who decides?” question. 

Who decides what counts as “assisting?”

Who has the authority to determine that this – or that act, does or does not constitute “assisting?”  The CPSO claims this authority in the context of “effective referral.”  It says “for clarity” that it does not consider making an “effective referral” “assisting.” 

However, the CMA states:

Physicians are not obligated to fulfill a patient’s request for assistance in dying but all physicians are obligated to respond to a patient’s request. This means that physicians who choose not to provide or participate in assisted dying (1) are not required to provide it or to participate in it or to refer the patient to a physician or a medical administrator who will provide assisted dying..

The implication here is that “referring” is “participating.”

But, according to the CMA, physicians are obliged to “respond,” and, if the patient requests:

transfer the patient to another physician or another institution…for the assessment and treatment of the patient’s medical condition and, if the patient meets the eligibility criteria, provision of assistance in dying.

The implication here must be that responding to an enquiry by providing complete information, and transferring a patient for the purpose of evaluation and possible provision of medical aid in dying does not constitute “assisting” or “participating.”

So for the CMA, referring is assisting, but transferring for the very same purpose, is not.

Geoff Blackmer, CMA VP of Professionalism is quoted in the Ottawa Citizen as saying:

“A lot of physicians are uncomfortable with sending a direct referral to a doctor who (they) know will undertake assisted dying with that patient. While the objecting physician may not be carrying out the act, they are still essentially endorsing the act.”

http://ottawacitizen.com/news/local-news/doctor-assisted-death-rollout-would-include-referral-database

Here Blackmer is going further:  he says that many physicians feel that making an effective referral would be “endorsing” the end result of the provision of medical assistance in dying.  What do those same physicians feel about transferring a patient where the end result is the provision of medical assistance in dying?  We can come back to “endorsing” in a moment, but let us stick with “feeling” for a moment.  Can my conscience (which I feel) determine what counts as “assisting,” can my conscience determine how close is too close for my moral comfort?  Is a Physician entitled to say – on the grounds of conscience that he or she will not refer (or transfer) because he or she feels that referral constitutes “assistance” or is the College entitled to say – either you are mistaken to feel that way because referral is not assisting, or, even if you do feel that way your professional ethical obligation is to refer.  It might turn out that the “who decides” question on what counts as assisting is moot, on the grounds that whatever an individual decides his or her professional college has got the authority to determine what that professional should do as part of his or her professional ethical duty, and that simply overrides – if the professional wishes to continue to practice -- his or her personal moral feelings.

Responding, providing information and making an effective referral

Both the CMA and the CPSO agree that a Physician should not block or impede access for a patient to a legally available medical service.  On what grounds?  Why are the CMA and the CPSO entitled to make that stipulation?  Probably on the grounds that both organizations feel that they have some obligations to define and promulgate the ethical expectations for their members.  In the case of the CPSO that mandate comes from the authority of the Province of Ontario which permits Physicians to practice within its jurisdiction under certain conditions, and gives the CPSO the authority to define those conditions.  The case of the CMA is rather different, but its ethical pronouncements presumably represent some sort of consensus of the membership on expectations of ethical behaviour.  If a Physician determined, on the basis of his or her conscience, that he or she should block or impede access for a patient to a legally available service (abortion for example?) for a particular patient both the CMA and the CPSO would be united in condemning that behaviour. 

The CMA requires that a Physician “respond” to a patient request for medical assistance in dying.  This entails some positive steps.  The Physician must inform the patient of all available options, including medical assistance in dying.  The Physician must also advise the patient how to access any central counselling, information or referral service.   The Physician must inform the patient of his or her conscientious objection to providing medical assistance in dying and all of this must be done in good faith, and, of course, a physician must not abandon his or her patient.  One can readily imagine the script a physician should follow: “I understand that you are making enquiries about medical assistance in dying.  This is not a service that I provide on the grounds that it contravenes my personal moral convictions.  However, if you wish to pursue this option, I will not abandon you as my patient.  Here are the options available for your care…. This is how medical assistance in dying is provided…  If you would like further information please refer to:…Ministry web site…”

So far so good.  However, in Ontario if you go to the Ministry of Health web site: https://www.ontario.ca/page/medical-assistance-dying-and-end-life-decisions

for information, the first instruction is “Talk to your Doctor…” that section then goes on to inform the patient that his or her physician is obliged to contact the central referral agency to arrange for a referral.  The patient cannot perform this task him or her self, it must be performed by a physician.  That is, the central referral agency requires physician referral.  A physician in Ontario cannot follow CMA guidelines without providing a referral.

Referral and transfer

The CPSO requires that a physician who declines to perform a service on the grounds of conscience must make what it calls an “effective referral.”  The CMA says that a physician must:

transfer the patient to another physician or another institution if the patient requests it for the assessment and treatment of the patient’s medical condition and, if the patients meets the eligibility criteria, provision of assistance in dying.

And

No physician may make a commitment not to seek assisted dying a condition of acceptance or retention of a patient.

But taken together there is something of a paradox, according to the CMA if a patient requests medical aid in dying and the physician is not prepared to offer that service, the physician cannot terminate his or her relationship with the patient but must, if requested “transfer” the patient for the assessment and treatment of the patient’s medical condition and if the patient meets the eligibility criteria, provision of medical aid in dying.  What is the difference between “transferring” the patient for the assessment and potential provision of medical aid in dying, while maintaining an on-going relationship with that patient, and making an effective referral for the same purpose?  Here it seems that the CMA and the CPSO are using different words for what is essentially the same practice.

Referral and “endorsement”     

Does a “referral” entail an endorsement?  The CMA argues that at least some people think so – and it backs that opinion by stating clearly that while responding and providing information is required, referral is not.  Does a referral to another physician who is known not to be a conscientious objector to providing medical assistance in dying constitute an endorsement and if so of what?  A referral to another physician does constitute some form of endorsement of the physician him or her self and his/her training, qualifications and competence to practice.  A referral implies that the physician doing the referring, reasonably believes the physician accepting the referral to be competent to perform the services that are the subject of the referral.  In this case that the physician is competent to assess the patient’s eligibility for medical aid in dying, and, if the patient is eligible, competent to perform medical assistance in dying.  There is no implication that the physician making the referral endorses the practice of medical aid in dying.  In fact, both the CMA and the CPSO require the referring physician to make it clear to the patient that he or she objects to the medical aid in dying on the grounds of conscience.  That is, the referring physician has already made it clear – before the referral, that he or she does not endorse the practice. 

The same issues of “endorsement” or otherwise are present for a patient “transfer.”  A physician could only transfer a patient to the care of another physician if he or she believed that physician to be competent to practice and competent to provide the relevant assessment, diagnosis and care. 

Conclusion

There is room for reasonable people to hold genuinely different opinions here.  A moral agent, acting in good faith, could plausibly feel that “responding” to a patient’s request for medical assistance in dying, in a way that: provides information about all treatment options – including medical aid in dying; and that includes “advising the patient how to access a central referral service;” which in Ontario means either calling the central referral service him or her self, or referring or transferring the care of the patient to another physician who will either consider providing medical aid in dying or who will make that call to the central referral agency, constitutes “assisting to provide” medical assistance in dying.  There is no room for a physician in Ontario to say – “I will have no part in this.”  Of course, a moral agent acting in good faith could also plausibly feel, that referring, or transferring, a patient to a physician who would consider providing medical assistance in dying in no way constitutes an endorsement of the practice, and certainly does not constitute “assisting to provide.”

This means that physicians may face a significant choice as each physician decides how far he or she will go with a patient.

“Personal conscience” and “professional duty.”

Much of this debate has been conducted as if it was a contest between the dictates of personal morality “conscience” and professional ethical duty or obligation, with the implication that professional ethical duty cannot be taken to override or defeat personal moral conscience.  That however, is, I think, a false and overly simple contrast.  For each one of us our set of values – or collection of moral principles is an agglomeration formed from a variety of different sources and shaped by a lifetime of reflection and experience.

The “bucket of values” approach

We each one of us are born with a bucket – our values bucket.  Those around us start throwing things into that bucket from the moment we are born.  My mother was instrumental in putting a whole load of values into my bucket – as was my father, my schooling, my religious upbringing, my own reading, experience and reflection, my academic training and so on.  And just as many things found their way in – many others were discarded along the way too – as I discovered that from my perspective, and upon reflection they did not work or did not fit.  I think this is true for all of us.  In the case of those whose professions have a strong values-base (medicine for example) those professional ethical values are a strong and integral part of professional training.  I think that in many cases those professional values, for instance, of respect for patients, and compassion are not imposed from the outside but rather absorbed into the person him or her self. The problem then, is not so much a clash between internal – conscience, and external, professional, but rather a clash between values, or principles both of which are lived and held by the person concerned.  This is the stuff of classical moral dilemma, and ultimately, moral choice.

Nor is this a discussion that is helpfully conducted in the abstract.  Autonomy, rights, conscience, professionalism, compassion are all fine things, but real situations have nuances not captured by those abstractions.  The hard problems arise for physicians when they are confronted by real people—a patient in the extremity of her need calling upon her physician to see her, in her situation and to exercise compassion.   

    

Book Review

Atul Gawande.  Being Mortal.  Medicine and what matters in the end.

In the introduction the author describes an early patient of his patient he calls Mr Lazaroff.  Mr Lazaroff had widely metastasised prostate cancer. He was dying and dying imminently. However he was offered a palliative surgery that might have the effect of slowing the progress of the disease, but only marginally, and which might also help relieve his pain. However, the downside was a highly invasive surgery from which it was vanishingly unlikely that the patient would recover.

The patient chose the surgery. And the expected outcome occurred.  The patient did not recover well and died within a couple of weeks. The author says: “I believed then that Mr Lazaroff had chosen badly and I still believe this.”  He chose badly not because of all the dangers, but because the operation didn't stand a chance of giving him back what he really wanted, his continence and the strength of the life he had previously known.  He was pursuing little more than a fantasy at the risk of a prolonged and terrible death, which was precisely what he got.

This book is about trying to avoid Mr Lazaroff's fate. The author believes that modern medicine has got dying wrong, that it has changed the way we die and medicalised it without really understanding what was happening. The result is that far too many people pursue completely unrealistic hopes at the end of their lives and end up missing out on what the author calls the “dying role.” He also argues that this problem is compounded by medicine that the practice of medicine end is complicit in this travesty of death and dying.

It used to be that people would be relatively well then get sick and then die quite quickly. The pattern has changed. Now it is more likely that a person will become progressively debilitated. The person will have a series of small crises, each one leaving him or her less well-off, less mobile, less active, than he or she was before. In addition there is the inexorable course of ageing. We do just wear out. The combination of these factors is that more and more people are living longer and longer in worse and worse condition. Add to that the shift in demographics which means that people now live alone after their children have left home for, potentially, decades.  Decades where they are independent and self- directed.  That loss of independence that comes with aging comes hard.

The fundamental changes in the nature of medical care that occurred over the last 50 to 70 years have meant the proliferation of hospitals and our ability to do far more and to extend the lives of far more people. However the problems of poverty and the problems of lack of family connection are not solved by increased medical care in hospitals. Hence the arrival of long-term care facilities. They are the repositories of people who do not have the capacity to live alone and whose families are unable or unwilling to take them in.  Or indeed where the resident is unwilling to be cared for by a family member.

There are changes in long-term care, changes away from an institutional warehouse model which seems in many cases just a way of caring for people’s bodies.  There is a shift towards methods of “assisted living.” This approach requires, in the first place asking people what they want. There is evidence that if you ask people what they want their answers vary depending upon their circumstances and, of course, the stage of life that they are at. This means that the hopes and expectations of elderly people, the desires that they have for their own lives, are completely different from the desires that they might have had as younger people.  Horizons contract and the realm of the possible become smaller. But this need not be a bad thing if we can reconfigure the structures we create to match the things they want.  If so, there is the potential for people to live rich and full lives in the way that they choose for longer and longer.

We have lost the ability to die. In the frantic rush to extend life, to find another cure, to keep going to keep 'fighting'  we have missed the point where it is possible to say goodbye to say what you want, to play the dying role. This means that people are not able to put their houses in order. They are not able to say the last things that need or want saying, instead they are strive for an impossible goal. The result is a loss that everyone feels. And this emphasis on an unattainable goal is fed and nurtured by the practice of medicine. Physicians are sometimes, perhaps even often, unable or unwilling to speak the truth. Many people find it very difficult to identify that this really is the end.

There is evidence that patients also end up accepting aggressive treatments, that perhaps they believe won't help, but which they accept in order to please their families.

If one genuinely understands that a person has reached the end, and understands that further aggressive treatment will not only, not prolong life, but may indeed even shorten it, and accepts even if the treatment does extend life it does so at a terrible price of quality, then one is free to do something better, to spend that time in far more worthwhile ways.  An acceptance that these things are true means that one is free to focus at that time in a person's life on the things that are really important. Some families described this time as the best time that they have ever experienced. Because now they have time and indeed the necessity to concern themselves with the things that they are really concerned about.

Gawande finishes by saying that physicians have been wrong about the job of medicine. Physicians have imagined that the function of medicine is to promote health and survival. But he says it is not. It is really about encouraging well-being. And there I think is the question for all of us who work in the field of health care. What is “well-being,” how do we promote it, and how at the end of the person’s life do we ensure that that life can finish well-lived?

Saying No: Ethics and Good Reasons for Denying Care

Should an alcoholic be denied a liver transplant unless he or she has been “dry” for six months?

Debra Selkirk the widow of Toronto businessman Richard Selkirk is preparing a constitutional challenge to the practice that denied her husband access to a liver transplant because he was an alcoholic who had only been “dry” for six weeks. CBC Radio ran this story, with ethics commentary on Friday November 6th. http://www.cbc.ca/radio/thecurrent/the-current-for-november-6-2015-1.3307075/widow-of-alcoholic-challenges-policy-for-denying-husband-liver-transplant-1.3307145 The patient was reportedly denied access to a liver transplant on the grounds that he had not been “dry” long enough. He died shortly thereafter. This restriction on access to liver transplants is pretty common across North America. Is it fair? Is it a justifiable restriction on access to care? What are good reasons for denying a person access to necessary medical care? Let’s look at some of those reasons and who gets to decide.

Medical futility

The best reason for not providing a person with a treatment is that the treatment will not work. That is, if the treatment would be medically futile – if it cannot provide the physiologic effect for which it is intended, then it does not need to be offered. (This needs a footnote, an exception is probably a resuscitation attempt. The reasons for this are complicated, it is probably associated with the idea that the standard of care in a hospital is that if a person arrests in hospital he or she will be resuscitated unless he or she has said otherwise.) Going back to not offering treatments on the grounds of medical futility, I would argue further that it should not be offered. (On the grounds that doing something that cannot work is a waste of resources, resources which are inevitably scarce.) In addition, the decision that a treatment cannot bring about the physiologic effect for which it is intended is an expert decision that belongs to physicians and care providers – rather than patients. This is clear in theory, but less so in practice. In practice treatments rarely cannot work, far more often they are unlikely – or even vanishingly unlikely to work. That leads to a rather different question – a cost-benefit decision, when is a treatment not worth offering – either because the likelihood of benefit is so low, or the cost is so high – or both?

Scarce resources and cost/benefit decisions

Cost benefit decisions of this type are amongst the most difficult for the health care system. Whether a treatment is “worth” the cost may very well depend on one’s perspective. There are also real puzzles of what constitutes a “benefit” and what benefits should count. For example some people would argue that continued physical life, even on life support, even if there is no evidence of interaction with the patient’s environment and even if the prospects for recovery are vanishingly remote would constitute a benefit. Others would say this is a benefit in name only, and certainly not a benefit worth funding from scarce health-care resources. Further, if person “A” accrues a given benefit for 5 years and person “B” the same benefit for 10 years, at the same cost then presumably we should fund person “B’s” treatment before person “A.” But that would have the effect of systematically favouring the young in health care – and do we really want to build in that bias to decision-making? These resource allocation questions are also those where authority for decision-making is most blurred. A cost-benefit, resource allocation decision is not simply a medical decision, nor is it just a matter of the personal preferences of the patient. At stake is what a community is prepared to pay for – so ultimately these decisions are small “p” political decisions, yet they are rarely identified or made as such.

Evidence and standards of practice

There are other reasons for denying access to a particular treatment or therapy, standards of medical practice and evidence are always relevant, and of course, on the other side, a patient can refuse care, and can do so either explicitly or by creating conditions that make it impossible to provide care. Do any of those reasons apply in the case of liver transplants and persons with alcoholism? The first question would concern the possibility that a liver transplant would be ineffective for a person who continues to drink or who has not demonstrated sobriety for six months. The evidence seems to be lacking. While it is true that for a liver transplant to be successful the patient would need to follow a regimen of immunosuppressive drugs and other care post-surgery and while it is also true that certain patients – on lifestyle grounds may be incapable of following such a regimen that is not the case for all people who have been diagnosed with liver failure as a result of alcohol consumption. So, rather than a six month rule or policy what would be required would be a careful assessment of each prospective patient in his or her actual situation.

Could it be a resource allocation decision?

Cadaver livers available for transplant are certainly scarce. But the issue of fairness in the first instance really only concerns whether the patient will get onto the list. It could also be that certain patients expand the liver donor pool by bringing with them potential live donors. Even if there was evidence that a person continuing to drink would make the transplant less effective, that is it might bring a shorter period of life, even then it is not clear that that should result in a denial of access to care. If we wish to treat persons equally we have to accept the idea that each individual’s life may well be of infinite value to that individual, in that respect we are all the same. The general approach in Canadian health care is that we are evaluated on the basis of our need and our capacity to benefit.

Bad reasons for denying care

We do not deny health care on any of the prohibited grounds for discrimination under federal or provincial human rights legislation. Nor do we deny care based on ability to pay.

Should we deny care on the grounds of personal responsibility for health status?

We generally take the view that ill health and disease are unfortunate facts of human life. No-one wants to be sick, or unwell so if you are it is a misfortune and the community will provide the health care you need to help you recover. Typically, we take the view that people are not responsible for their ill-health. But what if they are? There are many illnesses, diseases, and indeed accidents that occur as a direct result of the actions people perform. Smoking causes lung cancer (and heart disease and…) overeating is connected to obesity and diabetes, alcohol consumption with liver disease, and, of course, skiing with fractures, hockey and football with concussions and so on. Leaving aside the issue of whether an “addiction” allows you to escape personal responsibility there are plenty of examples of cases where individual choice has negative health consequences.

Should we be held responsible for those choices? The answer, of course, has to be yes. I must be responsible and accountable for the choices I make in my own life and that must include choices about diet, exercise, smoking, alcohol and so on. And certainly, as a community we should be reinforcing and promoting that individual accountability.

 But can or should a publicly funded health care system hold us accountable by denying care? Here, I think the answer has to be no. I do not see how health care providers (or anyone else for that matter) could possibly become the arbiters of the deserving and underserving sick. Were you driving too fast when the crash occurred? When did you stop smoking – have the last drink? How often do you exercise…? What would it look like to deny care under those circumstances? This would mean that we would refuse care to those who were suffering and dying, it would mean that we would turn people away from our Emergency Departments, it would mean that we would turn our backs on those in need.

 I would not wish to be part of a community that made those choices. But, health care resources are always limited, and that always has the effect of meaning that if we do “this” then there is some other good “that” that cannot be performed. Those choices must be made, but they must be made openly and on grounds we understand and accept.

Debra Selkirk is forcing that discussion onto the public stage, and thanks to her for that.

Rob Butcher. November 2015

Vaccination, ethics and health care workers.

Flu season will soon be upon us and once again the issue of “encouraging” or perhaps “coercing” health care workers to get vaccinated will be upon us. The accepted evidence is that flu vaccination is the best available method for reducing both the spread and the influence of influenza. Therefore, because health care workers care about the safety of their patients there are good ethical reasons for getting vaccinated. Health care organizations should encourage vaccination as a legitimate patient safety initiative and I would argue health care professional associations should do the same. Health care organizations also have an obligation to ensure that vaccination is as easy as possible. However, what happens when vaccination rates in a particular organization remain low? One approach, increasingly adopted by hospitals in Ontario was to adopt a “vaccination or mask” (VOM) policy. A VOM policy requires hospital staff to be vaccinated – or, if they cannot or choose not to be, they must wear a mask. The nuances of the policies vary, sometimes a mask is required for the entire flu season sometimes it is only required when there is an outbreak – either in the community or within the hospital. Hospitals argue that the legitimate goal of protecting patients permits them to introduce such polices and that employee rights are respected in that the employee can choose his or her method of patient protection. These policies resulted in a number of grievances being filed across the province and the first of those regarding the Sault Area Hospital was adjudicated this month. Arbitrator’s decision in the Sault Hospital’s Vaccinate or Mask policy. The arbitrator was asked to – and did, evaluate all the scientific evidence presented. He took the view that it was his job to decide on the weight of the evidence, not to declare a “draw” in the face of competing evidence. An alternative approach would be to accept that an employer has the right to act on the basis of “good” though not unchallenged evidence. The arbitrator found that the vaccination or mask policy was introduced to drive up vaccination rates and that the requirement to wear a mask for the entire flu season (up to six months) was not warranted on the grounds of patient safety. The policy was therefore found to be coercive. The arbitrator took the way in which the vaccination or mask policy had been adopted and implemented to be significant. The, “or mask” part of the policy was adopted quite clearly as a means of driving up vaccination rates and the mask requirement was introduced despite the lack of evidence that surgical masks would make an appreciable difference to patient safety. A sledgehammer and a nut. The benefits to patients of a vaccination or mask policy accrue if transmission from health care workers to patients is diminished. But the benefits of the policy only come from diminished transmission by those HCWs that only got vaccinated or wore a mask because of the policy. Many HCW would get vaccinated or wear a mask regardless of the existence of a VOM policy. The evidence that reduced transmission from this group is significant is lacking. The policy that requires wearing a mask for the whole flu season is therefore disproportionately onerous and unjustified. Further, if wearing a mask was warranted on the grounds of patient safety, then, in a year where there is a significant mis-match between the vaccine and the prevalent flu strain, rendering vaccination substantially ineffective, all staff, vaccinated or not, should be required to wear a mask. This, of course, does not happen. Ethics and policy. An ethicist should probably not be seen arguing for the limits of ethics and policy setting but it is worth pointing out one other significant and salutary part of the arbitrator’s discussion. The Toronto Academic Health Science Network’s Healthcare Worker Influenza Immunization Working Group published a report in February 2014. In that report the ethical considerations relevant to influenza vaccination policies were reviewed. They included the duty not to harm others, proportionality, individual liberty, and privacy. They concluded that VOM policies were less intrusive than simple vaccination-required policies, and that VOM policies would be ethically defensible if voluntary vaccination rates remained low. The report also identifies that the key factual pieces – that mask use reduces transmission or that VOM policies have resulted in reduced outbreaks of influenza in hospitals would have to be established. However, the report contains no evidence that supported either of those two key factual components. In ethics there is a long-standing division between “facts” and “values,” or between “is” and “ought.” Roughly, the facts alone cannot tell you what you “should” ethically do. However, ethical reasoning often relies heavily on facts. Often in our ethical decision-making we argue, we should do this because – it fits with our values or principles, and these are the relevant facts. But the facts have to be there and they have to be right. Do you get vaccinated? (I do.)

Professionalism and ethics

The College of Physicians and Surgeons of Ontario (CPSO) has a policy draft out for consultation on Professionalism and Human Rights. Though the policy would directly apply only to physicians the topics raised in the policy are significant for all health care professionals.

The nature and sources of moral – or ethical obligation.

I will use the words "moral" and "ethical" interchangeably, some people wish to maintain a distinction between "moral" as something more within the personal domain, and "ethical" as something more public or social, but as we will see in this piece that distinction won't help us, at the end of the day there is just you, or me, deciding what you or I will do. We have a variety of sources for our moral or ethical commitments. I am a member of a family, and a community, I live in a shared environment, each of these bring moral obligations. I have obligations to my children, my partner, and my extended family and I have those obligations because of my relationships with those people. I have an obligation to my community and environment because I share that space with others. Some would argue that I have ethical obligations to respect the law and some people have moral convictions that stem from their religious beliefs, and – and this is the issue here, many of us have ethical obligations that stem from our roles as professionals. (Of course those preceding couple of sentences could be a book chapter – or indeed the book itself, this is all contested territory, but the point I want is that our moral obligations legitimately come from a variety of sources.) Most of the time that all fits more or less neatly together. We typically choose our relationships, religious beliefs and professions in accordance with our deepest values and we can often juggle the pieces to fit. But not always.

 

An example of conflict

Some years ago, in the aftermath of SARS many health care organizations started to develop pandemic plans. In the context of those plans issues of staffing arose, what would happen if there was a pandemic and health care professionals were fearful for their own safety? I was summonsed, along with the other ethicist working in the area and we were told by a senior hospital administrator that we were to go out and do some education sessions on the "duty to provide care." After my initial reluctance to do what I was told… the next thing was to think about the duty to provide care. Is there such a duty for a health care professional? And of course it's pretty easy to get to the conclusion – yes. But as the sessions progressed it quickly became apparent that that was only part of the story. Is there a duty for a health care professional to provide care – yes. Is there a duty for a parent to look after his or her children – yes. What happens when those two duties collide? (When your day care plans have fallen though because your usual provider is sick and so on.) In this case a professional ethical obligation came into conflict with a personal moral obligation. In this case it is clear what people will do but this realisation interestingly shifts the problem for organizations. The original thought was that the obligation to provide care should be preached – and that this would be enough – in effect the burden would be placed on the shoulders of care providers. But this could not be the solution. Care providers themselves have other, potentially competing moral obligations too. The real problem for health care organizations had to be to work out how to support staff to make it as easy as possible for them to fulfill their health care obligations. That would mean encouraging people to make contingency plans for their other obligations – and supporting those plans where possible, and in providing as safe as possible a work environment. Sometimes our professional obligations can come into conflict with our other obligations – and at that point we have to decide what we – as persons will do.

 

Physicians and the duty to refer.

First, let's lay the groundwork. Medicine is a self-regulated profession. That is, medical practitioners have been given the social right to set their own standards of practice and to ensure that the training, education, and discipline of practitioners meet those standards. In Ontario the authority to ensure that this occurs is granted to the CPSO. The CPSO describes self-regulation as a privilege, and medical professionalism as a social contract, a covenant between the profession and society. (The Practice Guide: Medical Professionalism and College Policies. http://www.cpso.on.ca/uploadedFiles/policies/guides/PracticeGuideExtract_08.pdf ) The CPSO acts, in effect, as the mediator between the medical profession and the broader society which grants physicians their authority to practice. Physicians, practising in Ontario have accepted a professional ethical obligation to practice in accordance with CPSO values and standards.

The draft policy says the following:

156 Where physicians are unwilling to provide certain elements of care due to their moral or religious

157 beliefs, an effective referral to another health care provider must be provided to the patient. An

158 effective referral means a referral made in good faith, to a non-objecting, available, and accessible

159 physician or other health-care provider. The referral must be made in a timely manner to reduce the

160 risk of adverse clinical outcomes. Physicians must not impede access to care for existing patients, or

161 those seeking to become patients.

162

163 The College expects physicians to proactively maintain an effective referral plan for the frequently requested services they are unwilling to provide.

http://policyconsult.cpso.on.ca/wp-content/uploads/2014/12/Draft-Professional-Obligations-and-Human-Rights.pdf

There are almost a thousand comments on this draft policy on the CPSO web site. Most of them objecting. In many cases the argument seems to be that, informing someone that while I do not do this someone else does, is somehow the moral equivalent of performing the deed itself. That does not seem quite right to me. It sounds a bit like suggesting that a librarian is responsible for doing the things described in the books on the library shelves. It is the case that a number of practices, for example, some forms of contraception, assisted reproduction, and abortion, are permitted in Ontario and can only be accessed through the medical profession. While a physician may choose not to offer those services him or her-self competent, ethical members of the same profession, in your jurisdiction, do, and informing your patient of that fact is not the moral equivalent of performing the act yourself.

The CPSO has situated the duty to refer in the context of the profession's commitment to the broader community. That professional commitment then becomes binding on individual physicians. From the social perspective it is easy to see the point. The health care system in Ontario is a system of interlocking pieces. Physicians play a privileged role in that system. Furthermore, access to any part of the system is often controlled by physicians. No physician therefore, should be in a position to impede access to that system. Hence the duty to refer.

Ultimately, it is up to each one of us – physicians or not to decide how we will conduct our moral lives. Our moral obligations do indeed spring from a variety of sources and in the event of conflict we, each of us, must choose what we do. But, how we honestly, and carefully reflect upon and conceptualize our moral obligations and how they do or do not conflict is hugely significant, and may make all the difference.