The following article was provided by our colleague, Dr. Michael Gordon, MD, MSc, FRCPC, Professor of Medicine in the Division of Geriatrics at the University of Toronto; Medical Program Director of Palliative Care and Former Vice President of Medical Services and Head of Geriatrics and Internal Medicine at Toronto’s Baycrest Geriatric Health Care System. It’s an insightful article on End-of-Life-Decisions: One Doctor’s Perspective.

“Who Can You Trust With Your Most Important End-Of-Life Decisions: Lessons From The Ontario Court Of Appeal?”

by Dr. Michael Gordon

Introduction

It is almost a given that older individuals invariably appoint their children to be their substitute-decision-makers when they set out to create a Power of Attorney for personal care, whether or not it includes an advance directive, known colloquially as a living will.¹ The understandable assumption is that who better can you trust to fulfil your most important decisions about end-of-life care than your most cherished family members? It is one thing if you have never communicated your wishes to your children; something I suggest is a serious failure of critical communication; it is another if after expressing your deep-felt wishes your children choose to re-interpret or apparently ignore your expressed instructions for their own personal reasons or values.

What One Might Expect from Family Substitute Decision-Makers?

All practitioners in the field are aware of or have had experience with the unfortunately common phenomenon of what family therapists may refer to as “dysfunctional families” of which there is a wide spectrum. The fact is that varying degrees of family strife and conflict are not uncommon. It is generally believed that with apparently fully functional and ostensibly loving and respectful families, when important decisions have to be made such formally or informally expressed wishes and values will be respected and heeded. It is less often anticipated but happens in practice that apparently loving and devoted family members, acting in the role of substitute decision-makers become dissociated from those they are supposed to represent and couch their decisions in terms of moral distress and personal psychological conflict. This concept of “moral distress” is more commonly used to describe conflicts that occur when health care professionals find that they are acting out on decision-making processes that conflict deeply with their professional and personal values and are powerless to intervene to change the decision.

Prototypical Cases

I have had cases in which the expressed wishes of the older patient that I and my colleagues were asked to comment on were what appeared to be clearly expressed and documented but were over-ridden or ignored by apparently loving and devoted children. A commonly repeated scenario is that an older person writes a living will in the presence of a responsible legal advisor and has consistently indicated a mentally competent wish to not have a permanent feeding tube provided under defined circumstances. Yet, the children end up requesting that such a tube be inserted even in the face of the apparently contradictory instructions. This often occurs in a circumstance of late-stage dementia or other brain diseases in which the level of mental interaction with those the person loves will never return to any semblance of function indicated to be acceptable to them or one that was acceptable to the person who gave the advance directive to not undertake such an intervention.

Case Study

In a recent Ontario ruling by the Consent and Capacity Board, released on June 14, 2012 it was deemed that the Power of Attorney for Personal Care signed by the patient in question almost 10 years prior to the hearing at a time that there was no claim by any of the parties that she was not capable of drafting the document. In the intervening years, the individual, known in the CCB hearing as FF (hearing TO-12-0289 and TO-0290) gradually developed dementia and required assistance in all of her activities of daily living. Tragically while in Florida for the winter with her personal support worker, she accidentally apparently inhaled some food which by the time emergency help came and assisted in expelling she had experience significant brain anoxia and did not recover significant consciousness. In the hospital in Florida, prior to her transfer back to Toronto, she had a feeding tube inserted to provide her the means of nutritional support as well as a tracheostomy to assist in maintaining her airway.

She eventually was transferred to Baycrest Hospital and as the ruling of the Capacity Board indicated, soon after admission the family produced an advance directive dated approximately 10 years previously which they claim they had not been  aware of previously that included among other expressions of wishes the following instructions, “I hereby instruct that if there is no reasonable expectation of my recovery from physical or mental disability, I be allowed to die and not be kept alive by artificial or heroic measures. I do, however instruct that medication be mercifully administered to me to alleviate suffering even though this may shorten my remaining life.”²

Witnesses were brought forth by the family including Rabbis attesting to her orthodox life practices and the expectations in Jewish Orthodoxy that artificial nutrition and hydration are not heroic measures. Rather than being conceptually artificial in the sense of a medical intrusion, such feeding methods would have to be considered part of normal and compassionate care; discontinuing such nutritional support would be contrary to the tenets of Judaism which they believe would have been important to her and which she embodied in all aspects of her life.  Her children suggested reasons that were presented by their lawyers of why she might not have understood at the time she was questioned. The lawyer who executed her advance directive gave testimony that her “normal” practice was to explain the details and implication of all instructions and despite the inability to recall the exact words used, the absence of any provisos indicated to her that the client FF (now the patient in question) understood what was written and what she signed; her religious beliefs did not seem to be a factor in her decision-making at the time of execution.

The CCB came down in favour of the request by the attending physician on behalf of Baycrest Hospital to be allowed to discontinue the treatments in the medically most humane manner possible. The family appealed the ruling which meant that for a number of months treatment as prior to the CCB continued.

The Ontario Superior Court of Justice handed down their ruling on April 3, 2013 (Friedberg et al vs. Korn: 03-58/12). After hearing the evidence from both sides and reviewing the rationale expressed in the CCB’s decision the judge ruled that the CCB had erred in a number of its assumptions and interpretations including the following points:

The patient in question may not have truly understood all the implications of what she signed due to language issues;

The lawyer who presided over the creating and signing of the Power of Attorney for Personal Care (PAPC) could not definitely document what was discussed specifically with FF and therefore her “normal” practice may not have captured important and subtle nuances that may have affected the decision to sign the document without for example discussion details of potential religious implications nor the true implications of terms such as heroic and artificial.

The issue of the patient’s life-long adherence to her orthodox Judaism was accepted as an important factor that was not sufficiently taken into account by the CCB because it was not mentioned specifically in her PAPC but it was thought that the claim by the family of her religious characteristics for her whole life could not be ignored and in a sense dismissed because not specifically noted in the document. A life of historical consistency seemed to have important sway on the court’s decision.

The other issue focused on the meaning and implications of terms such as heroic and artificial; it was agreed by the physician that at the time of the procedures being undertaken one might have classified them in those terms. It was argued that the heroic aspect of maintaining the tubes in place was likely long passed as they were causing no particular discomfort or harm. As for understanding the word artificial, the argument returned to the very well-known tension between those, primarily from the religious world, and those from the secular and medical world who see nutrition provided by a feeding tube as an artificial intervention as any other mechanically-based medical treatment, rather than as part of the normal obligations  to a patient to provide them with life- sustaining nourishment and fluids.

At the end the Court ruled in favour of the evidence of the children and relied on the evidence of the solicitor  and therefore against the physician and institution and overturned the ruling of the CCB so that the patient continues to receive nourishment through a feeding tube, has a tracheostomy to facilitate the patency of her airway and receives treatment for inter-current illness such as infection with antibiotics. She continues to be in a minimally aware or alert state. ³

Discussion and Implications for Future Advance Directives and the Health Care Consent Act 

A great deal of effort, support and encouragement has accompanied the creation of Ontario’s Health Care Consent Act and  the jurisprudence that governs issues of consent to medically treat in other provinces The underlying ethical principle for this major piece of health-related legislation is the foundational principle of autonomy as originally outlined, described and virtually embedded into the practice and values of North American ethics  since the release of the first edition of Beauchamp and James F. Childress classic text Principles of Medical Ethics in 1977 with the latest 6^th edition having been released in 2009. The reason that this book had such a profound effect on the medical and subsequently ethics and legal communities is that for the first time since ethics entered into the practice of medicine, the classical and traditional primary ethical foundational principles of non-maleficence and beneficence, which in essence were held closely in the hands and culture of the medical professionals, was transferred to the patient.

By formally allowing for and in essence requiring patients to provide consent to all medical interventions, the dominant role of the physician was modified to a more collaborative and supporting role, even as an expert than in the previous centuries of medical practice. I changed forever the way decisions about how medical care would be made in the future. It has been a slow evolutionary process but in contemporary North America there is virtually no health care practitioner who would undertake any clinical activity without first obtaining a proper informed consent to treatment or because of situations of necessity for which there are definitions for extenuating circumstances.

Consent to treatment is the natural consequence and legal translation of the ethical principle of autonomy ⁴ as it is the way that an individual can manifest their personal values, choices, characters, belief systems and other aspects that impact on why people make the decisions they do.  (Prior to the world of consent, it was physicians and through them or via other professional dictates who determined what treatments would occur through their superior knowledge, beneficent nature but also by dint of their professional standing, respect and the fact that law in general virtually always sided with a physician’s best, considered, and professional opinion. ⁵: any physician old enough to recall practice in the era prior to the autonomy movement or from jurisdictions that this is not well developed will understand the power of the physicians opinion in patients’ decision-making. That “consent” may have been required, the actual process of getting it fell far short of what discussion and explanations are currently expected to occur.

The Development of the Advance Directive Concept

Once informed consent was established as a requirement for treatment and became universally practiced, and as an outcome of advances in medical technology, some formulae had to be developed to assure that necessary and life-saving treatments could take place in the face of the impossibility of getting consent because of the inability of the person involved (the patient) to provide it. This is where the doctrine of necessity always has and still does apply. As well, the age-old informal practice of turning to family members or close friends to provide substituted consent was merely an extension of the ancient practices that parents would have over their children and in many jurisdictions that husbands would have over their wives. With consent becoming integrated into care decisions, the concept of substituted consent also was required for those for whom decisional-capacity was not existent or not possible because medical conditions such a loss of consciousness or mental disease and dementia clouded the decision-making abilities of some individuals.

With the advent of Cardio-Pulmonary Resuscitation (CPR) in the early 1960’s it took only a few years before it became not just almost universally available in North America but began to be deemed part of the obligatory standard of care especially in the acute hospital setting. Yet, many clinicians began to observe that from what seemed to be a life-rescuing intervention under very defined and special circumstances, it had virtually morphed itself into what many believed was an end-of-life ritual that was hard to decline either for what was perceived to be ethical and clinical reasons and for others for medico-legal reasons. The idea of “letting someone die” who could be potentially saved, became virtually anathema in the acute care setting. The media responded with depictions of CPR with not just an over-dramatized impression of its success but when looked at objectively a highly inflated success rate which is what the public began to believe was the case. When applied virtually universally, it became clear to health care practitioners on the front line- that many individuals of all ages and stages in life had medical conditions in which the process of dying was the most that one could expect, who were subjected to CPR as their last medical rite of passage, rather than being allowed to die peacefully. It became such a well-recognized issue that a virtually subterranean practice of the “slow-code” developed which fulfilled the appearances of CPR without truly exposing the dying patient to the true indignities of the CPR chest pounding, often rib-breaking process.

Eventually through a combination of lobbying by enlightened medical practitioners, lawyers and legislators, the first advance directive, the DNR order came into being. Many hospitals developed their own individual policies about its implementation but once the law allowed for it, discussions about DNR orders began to be part of the conversations between very ill individuals and their treating doctors. Safety valves existed so that people who might potentially benefit from CPR were not deprived of it because the conversation did not take place, but a new psychology was developing in North America; asking the patient before performing a medical act if that was acceptable to them, asking a patient at risk of a cardiac arrest if they wanted CPR should it occur and allowing individuals under both situations to refuse the medical intervention for whatever reason they had as long as there were deemed capable of making such a profound decision. ⁶

The role of the Power of Attorney for Personal Care (POAPC) and Attorney or Proxy for Personal care (Substitute Decision-maker)

With the need for consent for most medical undertakings and the major advances in medical technology it became abundantly clear that there would always be individuals for whom consent should be obtained who were not able to provide it in a timely fashion; in emergencies physicians were allowed to act according to Common Law established precedents and in the new legislative initiatives, but in the face of the inability to give consent the need developed for a robust system of determining who could give consent on behalf of another person or refuse consent based on established criteria. The duties of the Attorney for Personal Care (Proxy or Substitute Decision-Maker SDM) became defined more clearly and ultimately in Ontario for example became embedded into law with the Health Care Consent Act of 1996 (last amended in 2010).

In this Act, not only are the criteria for action or defined in detail comprising most possible circumstances with some degree of flexibility to assure that all decisions that have to be made can be made, but within the Act was the provision of allowing the SDM to follow advance directive instructions provided by an individual as long as the instructions at the time that they were given reflected a capable decision. Thus was generated the concept of the advance directive through which an individual by appointing an SDM could have their wishes fulfilled sometime in the future by the person appointed by them to and by the content of the Advance Directive which presumably reflected the wishes of the person at a time that they were capable of considering and expressing such health-care related issues. ^7,8

Formulation of Advance Directives

An advance directive is merely a tool that should be part of what is often called advance care planning. With the complexities of new medical technologies and the increased growth of the aging population and with an increase in the prevalence of cognitive impairment and dementia, it is becoming clear to all concerned that some level of discussion, planning and documentation might decrease the likelihood that someone will receive treatments that they would prefer to forgo. The Ontario Health Care Consent Act attempts to assure those involved in their advance care planning and those that wish to assist family members or assure within the framework of the law that such wishes will be respected often recommend that an advance care directive be in writing, even though it is not required by law. The main problem with the lack of a written document that outlines one’s preferred wishes is that verbal instructions might be challenged if those responsible for fulfilling their legal duties are in disagreement about what was said or intended by the verbal advance care request.

The other important factor that is often forgotten in the advance care planning process is that the advance care plan is merely the communication of the persons’ preferences which are then to be interpreted and in essence translated into an actual care plan based on the clinical circumstances at the moment that the decision for treatment has to be made. The advance directive is not a substitute for consent to treatment or refusal, but rather a statement of preferred wishes to the person(s) responsible for consenting to or forgoing an individual treatment undertaking. Advance care directives cannot “demand” a treatment that is not part of the protocol or valid clinical options in a given therapeutic situation, but it can instruct the SDM to refuse a treatment even in the face that the particular treatment has a substantial likelihood of success in the same way that a competent person can make that choice.

Relevance of the CCB and Superior Court Rulings in this Case

Under normal circumstances the advance care document that was provided to the health care staff in essence “after the fact” had given instructions to the SDM which in fact was shared equally by FF’s three children. According to the law they would have to agree together on the decisions related to treatment and if not some adjudication process might be required. This was not the case.

It is known that sometimes children claim, that even in the face of a very clear instructions about not wishing permanent artificial nutrition and hydration (feeding tube) in a well-documented living will that they “cannot bring themselves to make that decision” or that they “could not live with themselves in making such a decision”. In such situations cases may end up being referred the legal tribunal that adjudicates such situations. Sometimes, as in the current case, even in the face of a decision that upholds the living will instructions, the family pursues all other legal means possible to allow them to not carry out the wishes of their parent- and these presumably are from families that espouse love and devotion as the reason for their failure to follow the instructions.

What is the solution short of designating a non-family member that one can trust as one’s substitute decision-maker, someone who is not intimately involved emotionally in the necessary decisions? It is at minimum to discuss with one’s loved ones the wishes and substance of the SDM and have them provide assurances as much as anyone can that they understand what is being asked of them and that they are willing and able to respect those wishes even though the wishes may be in conflict with their own beliefs and values and emotional capabilities. As one can imagine that is a very difficult discussion for most family members to have.

Guidance for lawyers carrying out the creating of an Advance Directive

The ruling of the superior court in this case should give pause to those lawyers whose practice includes the creating of advance directives. The lawyer in question who created FFs advance directive claimed that she “always” had the same conversation with clients and had a template that she used to make sure all the issues of importance were discussed and that the person read the document so when signed she was sure they understood it. The superior court was somewhat critical  with her process in that it could not on the individual basis of the discussion with FF and the process that went into the explanation of the meaning of the terms being used, be  certain that FF really understood and appreciated the terminology used in the document as was claimed by her children. Even though good arguments were made as to the validity of the assumption that FF did understand the language and the meaning of what she was signing the judge accepted the doubt that perhaps that this was not the case and thereby over-ruled the decision of the CCB which raises serious questions about the weight put on advance directives by most individuals, lawyers, physicians and ethicists.

Does the Rasouli case have anything to add to this conundrum of law and ethics?

The recent ruling the Ontario’s Rasouli case which made it to the Supreme Court of Canada has allowed for an SDM to refuse the designation of her husband in a minimally conscious state already for almost two years, and who requires treatment in an intensive care unit (ICU); The rationale in essence focused on the need for consent to have the mode of treatment changed from intensive care to palliative care as deemed clinically appropriate by the treating physicians which according to the Health Care Consent Act could be refused by the SDM based on her understanding of his strongly held religious beliefs. ^7,8

Unlike the current case in question, there was no advance care plan not advance directive, but the word of the SDM and evidence to the patient’s over-whelming religious beliefs. Even had and advance directive existed it might well have contained words to the effect that “all efforts must be continued within the spirit of my religion to keep me alive under all circumstances” (there are many religious people that adhere to the sanctity of life precept. Of course the concern of the medical profession and many ethicists and health care administrators is that such a basis of decision-making can make it almost impossible to discontinue what is believed to clinically non-beneficial therapies if they conflict with religious values of instructions. The previously well-reported Golubchuk case from Winnipeg Manitoba has a lot in common with the Rasouli case. In June, 2008, after seven and a half months on life-support, Samuel Golubchuk died of natural causes. But this was after a very heated conflict between individual physicians and the patient, his family and their lawyers and the hospitals administrators and the College of Physicians and Surgeons of Manitoba. That he died before the case move up the legal ladder means a ruling about his situation will never be known. ⁹ The Rasouli case in Ontario however has many issues in common with the Winnipeg case.

Why Have A Health Care Consent Act?

Of great interest to all those involved in end-of-life care and planning and dealing with patients and their families is an assumption if one takes the time and effort to undertake an advance directive or living will as it is colloquially called it is assumed that those instructions and wishes will be respected. It would be very prudent for anyone making such an undertaking to discuss the content and the wishes with those who are expected to carry out the directions so that there is no misunderstanding as to what is meant by the statements often used in such directives. If at the end of all of these steps it becomes known that there are ways around such carefully thought out instructions through various legal attacks it might become less compelling for individuals to take the steps to outline their wishes.

Guidelines for A New Advance Directive Process

There have been many attempts to create advance directives that truly capture a person’s wishes and values so that anyone trying to adhere to them will have little in the way of doubt as to their meaning. One such attempt that gained a good deal of popularity and traction in Ontario some years ago was the Let me Decide kit developed by geriatrician Dr. William Molloy. ⁹ For Lawyers who are committed to helping their clients achieve their goals, it might be prudent to take the following steps at least in order to assure that their wishes are clearly expressed, that those that might have to carry them out know about them and are willing to do so, that the language used is clearly understood by the client and that issues that might be brought up in any challenge to its content will be addressed by the document and the process of providing, reviewing, accepting and signing it Some might suggest that in addition to the suggestions below, a video recording of the whole process might provide the best assurance that one’s wishes when the time comes are being respected:

1. Document the meeting with the client and in detail the issue of an advance directive that was discussed;

2. Explore the salient wishes of the client that is requested to be included in the directive and the main philosophy behind those wishes  (no suffering, not to prolong life if no chance of return to level of function that will allow for socialization, communication, enjoyment of food taken through the mouth etc.¹¹);

3. Document if there are any religious considerations that should be taken into account and if not state clearly that no religious dictums, practices or traditions should be brought into play on the treatment decisions that are being considered;

4. Refer client to a physician or more than one physician depending on the circumstance to do two specific things:

1. Assure the client (patient) and lawyer that the person is capable of making an advance directive

2. Explain the medical meaning of terms so that when instructions are being given vague or euphemistic terms such as heroic are not used but specific interventions are prohibited such as artificial nutrition and hydration ( specially call it feeding of liquid foods through a feeding tube inserted directly into the stomach) and stipulate if that means on a permanent or on-going basis or temporary because of an inter- current illness or surgery which might be the case ¹²

5. After the document is complete and edited properly or if one of the pre-printed forms is used such as that provided in the Let me Decide kit or other pre-printed form review its content, have the client sign it and in the notes of the file, indicate that the client reviewed the document and could explain in clear language what was being requested and attest to that in the file and if a video recording is used on the video itself.

Conclusion

The concept of the advance care planning through verbal or written advance directives is very attractive for those who desire to maintain some element of control over their final period of life. For those with strong feelings about limitations to medical treatments in an era of apparently endless technologies, an advance directive might provide solace that an end can be expected and organized that will be as natural as possible without unnecessary suffering or unwanted prolongation through the application of medical technologies.

To discover that the law doesn’t necessarily support normal and what most people would deem adequate steps to assure that such wishes are respected is very disquieting. For physicians and lawyers who generally recommend to our patients and clients that an advance care plan and advance directive might achieve their end-of-life goals, it may be necessary to rethink the process to assure our collective selves that those to whom we in good faith entrust our wishes will not be able to find ways to ignore them whether for their own purposes or presumably for the apparent benefit for the person on whose behalf they are supposed to be acting.

References
1. Advance Care Planning. Advocacy Centre for the Elderly (ACE)
Link to reference

2. The Health Care Consent Act: S.O. 1996, chapter 2, schedule A, as amended AND IN THE MATTER OF FF ( TO-12-0289, TO-12-0290)
Link to reference

3. Friedberg et al v. Korn, 2013 ONSC 960, Court File No. : 03-58/12, 20130403 in Whaley Estate Litigation Newsletter Vol.3 No. 1 April 2013
Link to reference

4. Charles E. Gessert. The Problem with Autonomy: An overemphasis on patient autonomy results in patients feeling abandoned and physicians feeling frustrated.  Minnesota Medicine. April 2008
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5. Meyer DH. For The Patient’s Own Good: The Restoration of Beneficence in Health Care by Edmund D. Pellegrino, MD and David C. Thomasma, PhD.(240 pp., $41.50, ISBN: 0-19-504319, Oxford University Press, New York, NY, 1988.)
Link to reference

6. Gordon M. Assault as Treatment: Mythology of CPR in End-of-Life Dementia Care.
Annals of Long-Term Care: Clinical Care and Aging. 2011;19(5):31-32.

7. Handelman M. Consent to Life Support: What the Supreme Court Said in Cuthbertson and Rubenfeld v.Rasouli
Link to reference

8. Schafer A. Right-to-die ruling: Win for families, loss for common decency. The Globe nd Mail, Oct. 18 2013.
Link to reference

9. Schostak Z. A Wake-Up Call for Our Community: Take Control of Your Health Now. Jewish Action. October 29, 2010
Link to reference

10. Measuring capacity to complete the ‘Let Me Decide: Advance Care Directive’ – SIACAD:  http://www.youtube.com/watch?v=hiVsZt-U2Eg) and http://www.letmedecide.ie/  (Let me Decide Molloy W)

11. Sarah Burningham, Christen Rachul & Timothy Caulfield. INFORMED CONSENT AND PATIENT COMPREHENSION: THE LAW AND THE EVIDENCE McGill Journal of Law and Health ~ Revue de droit et santé de McGill. Volume 7, Issue 1 (2013) (pp. 123-128)
Link to reference

12. Gordon M. Artificial Nutrition and Hydration: Is it Really What you Want? Canadian Virtual Hospice. 2013.
Link to reference