When I tell people that what I do professionally is “look after older people,” I often hear responses such as: “Oh, that must be so depressing;” or sometimes, “Isn’t that wonderful, you must be a special human being;” and on occasion, “there are so few of you—what will be in the future with so many old people using up health care resources?” When I add that I am also involved in palliative care, you can imagine the response, but usually permutations on the “dealing with death every day must be the most depressing thing a doctor can do, how do you do it?” Just think, combining looking after the elderly person in a palliative care setting might be interpreted by those who have never had to experience such a combination as the ultimate in depressing; something that only a “saint” or “medical masochist” would choose as a profession.

First, to settle the issue, my colleagues and I involved in the same domains of medicine are neither saints nor, for sure, masochists. In fact, I could say that for all the health care providers, such as nurses, occupational and physical therapists, social workers, dieticians, and pharmacists, undertake their professional responsibilities with dedication, commitment, and the utmost in humanity. They usually combine these attributes with an enormous respect and interest in the narratives, the family interactions, and ties that each of their patients bring with them, irrespective of their illness. Having spent a career undertaking many aspects of medical practice from Internal Medicine and all of its subspecialties, including intensive care, I have no hesitation saying that my colleagues and I probably share much good humor, laughs, life’s pleasures, and experiences, as well as tragedies with our patients and families. They all share a wealth of human experience with all its fascinations, accomplishments and disappointments.

Within this context it is worth considering the wide range of beliefs and values that older people and their families carry within them as they contemplate the latter period of their life. This may be combined with significant personal physical pain and psychological anguish. At times there is the clear acknowledgement that they are “getting close to the end” and do not want to prolong a life that they have long ago accepted as finite and do not wish to risk suffering during their very twilight days, weeks or months.

It was with this in mind that I was especially impressed by a few newsworthy items that seemed to address the universal human struggle about life and the trajectory towards death from different perspectives. First there was a very moving piece in the February 2, 2013, New York Times written by Louise Aronson, an associate professor of medicine and geriatric specialist at the University of California, entitled, “Weighing the End of Life,” which in fact focused on her aging dog and all the trials and tribulations she faced deciding on when “enough was enough.” She eventually decided to have this wonderful, loving, and loved pet put down. In the article she mused, “Since then (after the dog was euthanized), I have often wondered whether we waited too long. We counted the time he spent sleeping as contentment ... I know that in elderly humans, sleep is more often a sign of chronic exhaustion, depression, and avoidance of pain. In dealing with the guilt brought on by our mixed feelings — we love him; he’s ruining our lives — I realize we may have overcompensated to his detriment. With dying humans, similar situations arise every day: hospital stays that fix the acute problem and worsen the chronic ones; emergency department visits that yield diagnoses, but require weeks of recovery from the waiting and testing; surgeries that are themselves minor, but provoke major confusion, complications, and hated nursing home stays.” She finished her essay with the story of a very elderly man with many illnesses who refused hospitalizations recommended by her. As she says in her final sentence, “He wanted to live — just not in the hospital, with poisons in his blood. He was sick and tired of feeling sick and tired. Like so many, his was a reasoned and reasonable stance.”

Reading her essay reminded me of one of the latter poems of Dylan Thomas (1914-1953) published in 1951: “Do not go gentle into that good night, Old age should burn and rave at close of day; Rage, rage against the dying of the light. Though wise men at their end know dark is right; Because their words had forked no lightning they Do not go gentle into that good night”. In the poem, the message is about fighting against the end of life while acknowledging the difficulty entailed and the struggles associated with the coming of life’s termination.

Of interest was at the time of The New York Times article about the dying of a dog, Pope Benedict XV1 shocked the world by his decision to step down as Pope, the first time in 600 years that such an event has occurred. The move raised a wide range of questions and speculation about the reasons and whether it would have been better to stay until his death, “fighting against his age-related (he is eighty-five years old) physical and emotional decline. As reported in a Time Magazine article on his decision, he wrote in his letter of resignation, 'After having repeatedly examined my conscience before God, I have come to the certainty that my strengths, due to an advanced age, are no longer suited to an adequate exercise of the Petrine (Papal) ministry ... this ministry, due to its essential spiritual nature, must be carried out not only with words and deeds, but no less with prayer and suffering. However, in today’s world ... both strength of mind and body are necessary, strength which in the last few months has deteriorated in me to the extent that I have had to recognize my incapacity to adequately fulfill the ministry entrusted to me.'”

There is a contrast to the final years and months of the previous Pope Jean Paul 11, who prior to his death, according to a report in the American Catholic website, spoke with increasing frequency about his age, his failing health, and death. The Vatican never formally acknowledged that the Pope suffered from Parkinson’s disease until after his death, although the tremor in the Pope's hand became unmistakable in the early 1990s, and media references to Parkinson's disease circulated for a decade before the Pope's death. In 1996, papal spokesman Joaquin Navarro-Valls was given a formal reprimand by the Secretariat of State for making a public comment about the possibility that the Pope was suffering from an "extrapyramidal syndrome"— an indirect reference to Parkinson's disease. Unlike Benedict XVI, he was determined to stay at the helm of the church, but also said he was prepared to be called to the next life. "It is wonderful to be able to give oneself to the very end for the sake of the kingdom of God. At the same time, I find great peace in thinking of the time when the Lord will call me: from life to life," he said in a 1999 letter written to the world's elderly. One could argue if staying at the Church’s helm in a state of failing health does more of a service to the Church than to resign as Benedict has done.

The last relevant media story reflecting when “enough is enough” is the suicide note, reported in a Globe and Mail newspaper letter to the editor published on Feb 8, 2013. In it, Ruth Goodman of Vancouver, writes, “I am a 91-year-old woman who has decided to end my life in the very near future. I do not have a terminal illness; I am simply old, tired and becoming dependent, after a wonderful life of independence. People are allowed to choose the right time to terminate their animals’ lives and to be with them and provide assistance and comfort, right to the end. Surely, the least we can do is allow people the same right to choose how and when to end their lives … I am writing this letter to advocate for a change in the law so that all will be able to make this choice.”

Of interest in terms of the wording chosen to describe the Pope’s decision to resign, Cardinal Timothy M. Dolan, the archbishop of New York, said, “By stepping down, the pontiff was saying, ‘my death is here; I feel weak, I feel fragile, I am frail.’” These words seem to echo those of Ruth Goodman. One can almost project that for a Pope to resign, something that has not been done for centuries, that might be in many ways akin to voluntarily leaving this world or at least what in essence is his world.

There were many letters to the editor following the printing of Ruth’s letter, some missing the point and referring to the “value” of the elderly rather than the issue which was Ruth’s concern, the personal decision to determine in one’s own world and life and when for each individual, “enough is enough”.

Acknowledgement
This article was first published on www.bestthinking.com

References
1. Aronson L. Weighing the End of Life. New York Times, February 2, 2013. http://www.nytimes.com/2013/02/03/opinion/sunday/weighing-the-end-of-life.html?_r=0&pagewanted=print

2. Thomas D. Do not go gentle into that good night. Poetry.org. http://www.poets.org/viewmedia.php/prmMID/15377

3. Text of Pope’s Resignation Announcement. Time Magazine: Associated Press Feb. 11, 2013. http://world.time.com/2013/02/11/text-of-popes-resignation-announcement/

4. Goodman R. Her last choice. Globe and Mail, Feb 8, 2013. http://www.theglobeandmail.com/commentary/letters/feb-8-lawyer-love-and-other-letters-to-the-editor/article8367639/

In North America, although Canada and the United States are separate countries, and each State and Province have their own areas of jurisdictional responsibility, both countries share the legal formulation that Supreme Court rulings set precedential interpretations of the law. Jurists, lawyers and legislators on both sides of the border often draw freely from each other's jurisprudence. Thus, the recent Rasouli decision by the Canadian Supreme Court should make physicians and policy makers on both sides of the border look carefully at the ruling's implications.¹ It would then be prudent for those given the mandate to protect at the same time the integrity of responsible, ethical and professionally sound health care to avoid the potentially negative impact this current ruling can have on patients at the end of life and those whose professional duty is to assure the most humane care possible.

As gracefully and forcefully explained and commented on by one of Canada's foremost ethicists, Arthur Schafer, the potential implications for the future of health care are profound. To quote, "The Supreme Court of Canada's 5-2 decision in Rasouli is a clear victory for the family. Sadly, it is a loss for common sense and common humanity. It is also a blow against physician integrity and potentially damaging to the Canadian health-care system."² As Schafer explains in his article, "The salient facts in this case are these: Hassan Rasouli has been unconscious and on life support since October, 2010. He is in a near-vegetative state with no realistic prospect for recovery. Although his body will inevitably deteriorate further, he can be kept alive, almost indefinitely, in a hospital intensive-care unit: He needs a tube down his throat so that he can breathe, a catheter in his bladder, large central tubes for fluids and medications, frequent surgical removal of infected skin tissue to prevent gangrenous infections, suctioning of his lungs to remove fluids that would choke him".

As Schaffer notes, "Mr. Rasouli's physicians propose that he should be given palliative care instead of life support. Continued ICU treatment is not merely "futile"; it is actively harmful. It can keep him alive, of course, but life is not an absolute value. Physician ethics does not permit procedures which on balance are harmful to the patient. Mr. Rasouli's wife, Parichehr Salasel, insists that her husband, as a devout Muslim, would want to be kept alive, even in these circumstances. She is his substitute decision maker (SDM or in American parlance Proxy for Health Care Decisions) and she refuses to consent to his discharge from the ICU and transfer to a palliative care program.

The judicial nuances and arguments in this case are not as important as the ultimate decision which was that according to the Supreme Court life support can be discontinued only with the consent of the patient or the SDM (proxy). Of equal interest of "rights" of patient autonomy is the hard fact that according to Schaffer, "in Canada, care in an ICU costs almost $1-million a year, per patient. Understandably, the number of ICU beds is limited and admission is strictly controlled." The numbers in the United States would be higher as almost all health care costs in the United States are substantially higher than their comparable cost in Canada.

The salient argument of Schaffer and one which appears already to resonate through the medical community as well as the administrators of hospitals is that, "The purpose of critical care is to save the life of the patient until the patient can recover to be discharged. The ICU is not intended for patients who can never recover. At present, critical-care doctors err on the side of admission. If they later discover that continued life support is futile, then the patient is discharged and receives palliative care instead."

If that equation is no longer assured, it could be that there will be a reluctance on the part of ICU physicians to admit patients who have small or marginal chances of ICU benefit if the risks are that treatment will have to be maintained long past the ability of the health care system to provide a degree of meaningful return to function—the use of religious standards could potentially endanger the integrity of the health care system; what limits can one then put on any religious belief that demands continued medical treatment no matter what the anticipated clinical outcome—modern medicine can keep organs going for a very long time.

As Schafer points out and something that is not addressed adequately by this current ruling but which is one of the foundational ethical principles on which modern medical practice is built is distributive justice. As he notes, "One person's provision is another person's deprivation." It is not hard to imagine a situation where a clinical situation was like Rasouli when the decision was made to admit him to the ICU. What if he had to been deprived of that admission and chance of recovery because another patient like Rasouli is now and whose family demanded continued treatment despite what many would deem to be futile or at least clinically non-beneficial treatment. One can imagine the implications of a patient dying because of ICU deprivation because of someone whose use of the ICU is outside it designated mandate.

Schafer's final conclusion is, "Cases such as those involving Mr. Rasouli…are comparatively rare. With sympathetic discussion and dialogue, a consensus can usually be reached. But in those cases where agreement is impossible to achieve, physicians are entitled to exercise their professional judgment. If the family disagrees, they can appeal to the courts." That is what happened in this case and the result is now part of the new equation of health care decision making.

The potential consequences remind me of a conversation I had some years ago with an American obstetrician and gynaecologist who said he had given up obstetrics because of the number of legal negligence cases he was handling at any given time. As he indicated, "Not having a perfect baby is always followed by a negligence or malpractice charge and even if at the end I am vindicated, the stress on my life in addition to my enormous malpractice insurance premiums are just much for me. I will just do gynaecology" Even for those who believe that births should be "natural" and promote the greater use of midwives, when things go wrong, it is physicians who provide the salvage. If they no longer will take on that role….it is the public, the potential mother and child who will be the victims.

For those of us who do eldercare and long-term care, what we can do is try to promote advance care planning in a way that assures that people address their future wishes and values and make sure SDMs and proxies will carry out their wishes and they really do understand the implications of their decisions. If one cannot be sure a proxy will indeed carry out the instructions it might be necessary to appoint an impartial person rather than a family member so that the emotional impact of what are often heart-wrenching decisions can be made according to ones' expressed wishes and values.

References

1. Handelman M. Consent to Life Support: What the Supreme Court Said in Cuthbertson and Rubenfeld v.Rasouli
2. Schafer A. Right-to-die ruling: Win for families, loss for common decency. The Globe and Mail, Oct. 18 2013
3. Youn A. Health care act's glaring omission: liability reform. CNN, October 5, 2012

It is clear to anyone who has lived with and cared for someone experiencing dementia or looking after a group of such individuals in a long-term care facility, that the issues of memory and recall are not the ones that play havoc with the individual and their caregivers, but the behavioural challenges. Not everyone with an illness causing dementia develops behavioural issues, often called BPSD (Behavioural and Psychiatric Symptoms of Dementia) but for those in whom this occurs, it might have a critical impact on the life they lead, the care they receive and the potential exposure to treatments that potentially might negatively impact their function, quality of life, place of residence or according to some studies life expectancy.

Studies done in the United States over the past decades and in parallel in Canada have been critical of the apparent ease and frequency with which residents of long term care experiencing BPSD are exposed to classes of medications called neuroleptics, which more recently have been subdivided in the older typical and the newer atypical neuroleptics or antipsychotics. It is always important to remember that these classes of medications were initially developed to address psychotic experiences and behaviours of those experiencing schizoaffective disorders in which delusions and hallucinations may be paralyzing to the individual and their introduction into care during the past decades, in series with the typicals preceding the atypicals; it has allowed the virtual emptying of the previous chronic psychiatric hospitals and has allowed many individuals living with such illnesses to manage in community dwellings with many normal aspects of life including educational and work experiences and abilities. In parallel, for many previously fractured families who have been able to re-incorporate family members with unmanageable and disruptive psychotic symptoms back into a family structure.

Almost as an after-thought, the use of these medications in older individuals who were experiencing symptoms similar to those of younger people with clear mental health, schizophrenic-type syndromes. These individuals were found to benefit from these medications in terms of the BPSD which often had some of the similar characteristics, at least on the surface of delusions and hallucinations which often affected their ability to live in community settings at sometimes forced those in some congregate community dwellings to be discharged because of what was interpreted as disruptive behaviour. With the apparent increased exposure to such medications, many of the products obtained negative reputations as did the long-term care facilities that seemed to use them excessively. With some initial studies it appeared that first the atypical medications appeared to be associated with excessive mortality profiles, mostly due to cardiologic disorders and then on closer scrutiny the typicals appeared to have the same negative side-effect profile. (http://www.nejm.org/doi/full/10.1056/NEJMoa052827)

This has resulted in policies in both the United States (Federal Nursing Home Reform Act (OBRA'87) Law & Legal Definition- http://content.healthaffairs.org/content/20/6/128.full) and in Canada to decrease the use of such medications in long-term care facilities, with either very complex administrative procedures to be able to use the medications in the first place and fairly substantial bureaucratic steps to continue their use. There are mechanisms in Canada whereby the volume of such medications used are scrutinized and the governmental administrative bodies that monitor such use may criticize or even penalize the organization where excessive use is deemed to be occurring.

It was therefore quite an eye-opener to read the article, "The Long-term Effects of Conventional and Atypical Antipsychotics in Patients with Probable Alzheimer's disease" published in American Journal of Psychiatry September 2013 (http://www.ncbi.nlm.nih.gov/pubmed/23896958). In the article the authors followed a cohort of 957 patients with dementia to time of nursing home admission or to death. Of the cohort about 25% were provided with either a typical or atypical antipsychotic. After adjusting for all the variables, it was concluded that it was not the medications that was responsible of increased nursing home admission or apparent increase incidence of death, but rather the underlying degree of psychosis and agitation experienced by these patients. If this is the case, it might result in a change in the way we address individuals with these symptoms.

No one, based on this study would re-introduce antipsychotics in an excessive cavalier fashion, but on the other hand the excessive fear held by physicians and families might be quelled somewhat with a proper balance of indications, dosing and the attempts at withdrawal after defined periods so that those who might truly benefit from these medications will receive them as required rather than using alternatives which may have their own inherent dangers and contra-indications. There are studies that demonstrate some potential benefit for some residents of long-term care for whom withdrawal is possible. (http://www.ncbi.nlm.nih.gov/pubmed/23543555).