Book Review – Medicine and what matters in the endFebruary 19, 2016
Compassion and ConflictOctober 24, 2016
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;
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;
nothing in this Act affects the guarantee of freedom of conscience and religion;
Preamble to Bill C-14
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.
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.
Principles-Based Recommendations for a Canadian Approach to Assisted Dying
Policy on Medical assistance in Dying
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.”
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.
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.
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.