Understanding the issues in end of life care (Revised)

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October 9, 2014
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Understanding the issues in end of life care (Revised)

 

Understanding the issues in end-of-life care.

There is a great deal of current discussion of end-of-life care, standards are evolving, there is new legislation pending in Quebec, a Private Member’s Bill before the House of Commons and a Supreme Court reference. The Canadian Medical Association has conducted town-hall debates and the College of Family Physicians is considering its response. The CMA has updated its position paper on Euthanasia and Assisted Suicide. (http://policybase.cma.ca/dbtw-wpd/Policypdf/PD14-06.pdf) On the 25th August 2014 Gillian Bennett an 83 year old woman from BC committed suicide rather than slip further into helplessness and dementia. (This is a link to her blog “Dead at Noon.” http://www.deadatnoon.com/) Yet despite all of this there is still a great deal of confusion about the topic, or more properly, topics. And all the time we ask confused questions we doom ourselves to confused answers.

Let’s try to lay the groundwork. First, I will not use the word “euthanasia.” (At least not until later in this piece.) Many people view the term as carrying a negative moral connotation. That is, many people believe that if an act is an act of euthanasia then that act is morally (or ethically) wrong. This just shifts the debate into a puzzle or argument about definitions and terminology – does such and such an act fall within the definition of euthanasia? The more interesting, and more direct questions concern the moral status of the act itself – should this act be permitted, why or why not? Second, this debate crops up in health-care and in broader social discussion under a number of different headings: end-of-life care, palliative care, advance directives, physician assisted suicide, physician assisted death, active and passive euthanasia, Do Not Resuscitate, (DNR) No Cardiopulmonary Resuscitation (No CPR), Allow Natural Death (AND) and so on. There are important conceptual, ethical and practical distinctions to be made between all of these terms, however, any of them can lead us into the broader discussion – and many of them could be the policy name for the process that governs practice within a particular health care organization. Any of them, including those that are relatively non-controversial or agreed-upon could be our gateway into a broader and more contested debate.

The current state of practice

Palliative Care P

Palliative care is defined by the World health organization (WHO) as follows: “Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.” Palliative care thus represents a way of seeing care, a philosophy of care that is not explicitly or necessarily about the end of a person’s life. Sometimes palliative care practitioners describe themselves as focussing on care rather than cure, on quality rather than quantity, and on the whole person rather than a disease process. In practice, a palliative care practitioner or team often gets called in far too late, for end-of-life care, when the patient is expected to die imminently, or when the patient is actively dying. “palliative care beds” in hospitals are often reserved for patients who are actively dying. This fosters a host of confusions. Sometimes people (and this can include both patients and practitioners) equate palliative care with end-of-life care, and resist it accordingly. This is unfortunate. Palliative care practitioners will normally argue strenuously that no patient needs ever to die in pain. That is, good palliative care can relieve pain and suffering at the end of a person’s life. The CMA consultation had as its primary conclusions that palliative care should be promoted and expanded and that access to palliative care should be far more readily available. Both these conclusions are uncontroversial. It is generally accepted that the process of providing adequate medication to relieve pain and suffering may have the anticipated but unintended consequence of shortening life. That is, it could turn out that if the patient continued in pain he or she would live longer than would be the case if that pain were properly controlled. It is accepted that providing good pain control in these circumstances is good medical practice and completely ethically justified. This concept of “anticipated but unintended” consequences is connected to the Catholic doctrine of “double effect.”

Palliative sedation refers to situations where the patient is sedated to unconsciousness to relieve physical or psychic pain until the patient dies.

Refusals of treatment

There are slight variations by jurisdiction across the country. In general, however, it is accepted that a “capable” patient (That is, a patient who meets the criteria for capacity to consent to health care interventions.) is entitled to refuse treatments. This entitlement to refuse treatments extends to any treatment, including life saving treatments, and treatments that have already started. Patients frequently refuse potentially life-saving interventions, such as CPR, or intubation, or nutrition through feeding tubes. Patients’ reasons are various, some are religious, for example a Jehovah’s Witness’ refusal of a blood transfusion, but others are grounded in quality of life considerations. Ultimately though, the reasons for a patient’s refusal of care are irrelevant, if the patient is capable of consenting to treatment, he or she is entitled to refuse that treatment, on whatever grounds he or she wishes. In end-of-life situations such refusals of treatment may have the effect of shortening the patient’s life. The key ethical idea is a type of autonomy.

Autonomy in this case comes in the form of “security of the person” in that my body is my own and no-one can interfere with it without my consent. Autonomy here is a negative freedom – a “freedom from,” rather than a “freedom to.” Confusion abounds here too. The requirement that a patient must consent to a treatment in order for the treatment to be instituted (with the exception of emergency interventions) gives rise to the “right” to refuse treatments, not a right to “choose” treatments – or better only to a right to choose treatments from amongst the treatments that have been offered by the appropriate health care provider. It is important to note that the patient has the authority to refuse treatments. This can lead to some confusion in practice. Some organizations require a physician to write a DNR order (DNR Do Not Resuscitate, sometimes DNAR, Do Not Attempt Resuscitation) to somehow authorize the patient’s refusal of treatment. This does not make sense. The patient’s refusal of treatment needs to be recorded and honoured, but it needs no authority other than the patient’s. (This is recognised by nursing codes of practice which expect nurses to record and respect a capable patient’s refusal of treatment, including a refusal of a resuscitation attempt.) In contrast, a DNR order may well be part of the appropriate notation if the physician has decided that resuscitation will not be offered as part of the care plan on the grounds that a resuscitation attempt would be futile or otherwise inappropriate. Current practice would expect that the physician or care team would gain consent to such a care plan before writing an order that includes DNR. This issue remains contested, it seems very odd to require a physician to seek consent to not do something (attempt resuscitation) that the physician in his or her best clinical judgment believes would be futile. This is the only situation I am aware of where consent is required to not do something useless. However, this is pretty much the standard practice. The same basic concept – that I am entitled to say what happens to me means that I could refuse not just treatment but other forms of care – including feeding. There are recent examples of patients who were clearly capable of making their own decisions who had terminal illnesses but who were not imminently dying who chose to forego food in order to end a life that, for the person concerned, was an unbearable burden.

Withdrawals of Treatment

A capable patient can refuse treatments – even after the treatment has started. This means that a patient can authorise the cessation or withdrawal of a treatment, including a life-sustaining treatment. This may mean that a health care practitioner is required to perform an action (such as disconnecting a ventilator) this can certainly result in moral burdens of care for care providers as in these cases they may well be performing an act that leads as a direct consequence to a person’s death. A physician can also determine that a treatment that has been initiated is now no longer indicated. That is, the treatment could be viewed as a “trial of therapy” where the anticipated or hoped-for outcomes have not materialised. It is within the physician’s scope of practice and authority to withdraw such treatments. The consent of the patient is not generally required because the physician has determined that the treatment is no longer indicated. In practice many physicians would seek consent to withdrawing a treatment in very many situations. But note the anomalous situations that this practice can give rise to. If patient consent was not forthcoming the physician or care team would be compelled to provide treatment they believed to either be pointless or positively harmful. (In Ontario there is a potential remedy to such situations through the Health Care Consent Act and the Consent and Capacity Board.) The Supreme Court of Canada in the Rasouli case determined that patients (or their substitute decision-makers) are required to consent to withdrawals of life sustaining treatments. This gives rise to the situation where care providers, if patient consent is not forthcoming, are required to continue to provide life-sustaining treatment even if the care providers believe that such care is inappropriate or futile in that there is no hope for a meaningful recovery. The Court was careful to try to limit this judgment to withdrawals of life-sustaining treatment only, and not more broadly to withdrawals of other treatments or to patient demands for treatments that physicians and care teams had not offered. (This decision applies in Ontario because it turns on an interpretation of Ontario’s Health Care Consent Act.)

Advance directives and substitute decision-making

The legislation varies across the country, but generally, whatever I can do while capable (refuse a treatment for example) I can do either through some form of written advance directive or through a substitute decision-maker. So, if under certain circumstances I would not wish to be resuscitated, or ventilated, or indeed have my pneumonia treated I can write an advance directive, or instruct my substitute decision-maker (In Ontario “power of attorney for personal care”) and those directives should be followed. There are certainly limits here. It is not clear if my advance directive that stated I should not be fed would be honoured by my care team. (I could certainly refuse the insertion of a feeding tube through an advance directive or power of attorney, but it is far less clear if a refusal of standard feeding would be honoured.)

Futile and Inappropriate

A treatment is “physiologically futile” if it cannot bring about the effect for which it is intended. A futile treatment is inappropriate, but there are other ways in which a treatment may be inappropriate – cost, minimal benefit, and low probability of success being the obvious candidates. But, of course, what counts as too costly, or insufficient benefit and so on are all contested concepts. Physicians are certainly not obliged to offer treatments that they believe to be physiologically futile. (With the possible exception of a resuscitation attempt – see above.) The question of physiological futility falls within the physicians’ scope of practice, expert judgment and authority. I would argue that physicians are obliged not to offer treatments they believe are futile. “Inappropriate” treatments are another category altogether. It is far less clear that physicians have the unambiguous authority to determine the inappropriateness or otherwise of a treatment. All of the above is acknowledged in the preamble to the CMA position paper on Euthanasia and Assisted Suicide: Euthanasia and assisted suicide, as understood here, must be distinguished from the withholding or withdrawal of inappropriate, futile or unwanted medical treatment or the provision of compassionate palliative care, even when these practices shorten life. The CMA does not support euthanasia or assisted suicide. It urges its members to uphold the principles of palliative care.

So, if that is the current state of practice, what changes are we looking at? Let’s use the CMA position paper as a launching point. The position paper on Euthanasia and Assisted Suicide offers some definitions. We will look at them, not because they are good, but because they are out there and illustrate some of the confusions.

CMA definitions

Medical aid in dying refers to a situation whereby a physician intentionally participates in the death of a patient by directly administering the substance themselves, or by providing the means whereby a patient can self-administer a substance leading to their death.

Problems with this definition

It masks distinction between physician assisted suicide (where the patient performs the act of killing) and physician assisted death where the physician performs the act. Many people take this distinction to be ethically significant. The phrase, however, is useful because it identifies the territory under discussion without the baggage of the term “euthanasia.” We will still have to decide exactly what acts are under discussion, is it physician assisted suicide or physician assisted death? Should both, or either be permitted?

Physician assisted death means that a physician knowingly and intentionally provides a person with the knowledge or means or both required to end their own lives, including counseling about lethal doses of drugs, prescribing such lethal doses or supplying the drugs. This is sometimes referred to as physician assisted suicide.

Problems with this definition

This is more commonly called physician assisted suicide, and the definition presented would have been fine as a definition of physician assisted suicide. The Quebec legislation uses the phrase “physician assisted death” to describe the practice, permitted under their new legislation, where the physician intentionally administers a lethal dose of medication – as part of palliative care.

Euthanasia means knowingly and intentionally performing an act, with or without consent, that is explicitly intended to end another person’s life and that includes the following elements: the subject has an incurable illness; the agent knows about the person’s condition; commits the act with the primary intention of ending the life of that person; and the act is undertaken with empathy and compassion and without personal gain.

Problems with the definition

The consent issue is crucial, the ethical evaluation of the act concerned may well turn on the matter of consent. So, this definition runs together practices that many would consider unethical with practices that many would not. This does not help the debate. It is also odd to include “empathy, compassion” etc. Of, course, these things are good but they are not part of a definition of “euthanasia.”

 

The standard philosophical analysis of “euthanasia” has a variety of categories, active and passive, voluntary, non-voluntary, and involuntary.

Categories of “Euthanasia”

 

Active An action is performed with the intention of ending a life Passive A potentially life-extending or saving action is not taken
Voluntary At the capable patient’s request or With the capable patient’s consent Not currently practiced in Canada Would be permitted under Quebec legislation Practiced in Canada DNR (patient request or consent) Patient refusals of treatment Patient refusals of life support Patient refusals of feeding
Non-voluntary Patient is not capable of consent * Unclear if this would be permitted under Quebec legislation or under other proposals to change Canadian law. Practiced In Canada Refusals of resuscitation, treatment, life support, but probably not refusals of feeding, authorized by an advance directive, power of attorney for personal care, or substitute decision-maker
Involuntary Against the patient’s wishes Murder Contested: Medical DNR against patient request or without consent

Withdrawal of life-sustaining treatment without consent, forbidden in Ontario (Supreme Court of Canada, Rasouli decision)

 

 

 

 

* There are important distinctions embedded in the phrase “not capable of consent.” I may not be capable of consenting, or making my wishes known now but I may have been capable of making my wishes known in the past. Current legislation, which varies across Canada, permits me to make determinations now – either through an Advance Directive, or through instructions to my Power of Attorney for Personal Care, or substitute decision-maker, about the care I would not wish to receive at some time in the future. See the box Non-voluntary, passive. It is not clear, though highly important, whether under proposed changes to legislation I would, while capable, be able to request active euthanasia to take place at some later time when I was not capable. (Non-voluntary active.) This is the issue raised by Gillian Bennett in Dead at Noon.

But there is also a category of patient who has never been capable of making his or her own medical decisions. This would include infants or young children or adults who have never been capable. Under current health care legislation these patients would have some form of substitute decision-maker make treatment decisions on that person’s behalf. If active euthanasia were legalized should substitute decision-makers (or anyone else for that matter be permitted to request or consent to euthanasia for a person who had never been capable of making his or her own decisions?

“Euthanasia” has become such a value-laden term it has become very difficult to get past the word to look critically at the actual practices we are concerned about. The CMA simply rejects the entire category of “passive” euthanasia as euthanasia.

Euthanasia and assisted suicide, as understood here, must be distinguished from the withholding or withdrawal of inappropriate, futile or unwanted medical treatment or the provision of compassionate palliative care, even when these practices shorten life. The CMA does not support euthanasia or assisted suicide. It urges its members to uphold the principles of palliative care.

So, let’s leave the word and focus on the deeds, and over to you: Should physician assisted suicide be legalised in Canada? Should physician assisted death be legalised? What should the limits be? Terminal illness? Intractable physical (psychic pain)? Voluntary (at the request of the capable patient) Can this request come in advance (an advance directive?)

There is very recent polling data available on this topic – and an analysis of that data will be the subject of a subsequent post.

http://www.dyingwithdignity.ca/database/files/library/DWD_IpsosReid2014.pdf

 

 

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