When one thinks of music and movement, the natural association is dance. In all parts of the world and in all cultures, there is some musical expression through dance, ranging from what may appear to be relatively simple rhythmic movements to compelling drum beats to complex ballets with narratives and dozens if not more dancers doing intricate steps to full blown orchestras. Anyone that has raised children recalls how even very young children, will move and shake to rhythmic music and the massive industry in all western countries of dance lessons starting with child students attests to its natural attraction and ability to fulfill what appears to be an intrinsic human desire.

I recall as a child being taken to ballet, modern dance, musicals with dance and even the renowned Rockets at the Radio City Music Hall by my mother who herself had been a serious amateur dancer in her youth and then a lifelong ball-room and late-life folk dancer with her seniors' centre on West End Avenue in Brooklyn. There was even a period of my pre-teen years when my mother attempted to teach me ballet steps at home which very soon was transposed into my desire to learn to dance to Rock and Roll, using my sister four years my junior as my every accommodating dance partner. Even many years after, in our mature and pre-senior years, at family celebrations we often could still do a dance number to something of the order of Rock Around the Clock or the theme song for Saturday Night Fever. She has continued to engage with multi- cultural folk dancing whereas I have slowed down considerably in my abilities to participate although I enjoy watching others, dance especially my children and more recently my granddaughters.

The general assumption probably held by most individuals that with physical and especially neurological disability, the ability to engage or think about participating in dance would likely naturally diminish. For people living with conditions that impose physical challenges to free and fluid movements, the idea of dancing is more often a dream than a reality. It is likely that it would not even enter the consciousness of most people with neurological disorders, especially those like Parkinson's Disease might be able to participate in, respond to and benefit from music, especially when it is within a framework of dance.

With this in mind the recent article in October 25th issue of The Globe and Mail, by Gayle MacDonald, "Unlocking the secret of Dance" was exhilarating and inspiring. In a partnership with the world-renowned Canada's National Ballet School, with the collaboration and influence of some its most prominent members and in a cooperative effort with among others Toronto's York University and my own Baycrest Geriatric Health Care System, it is hoped that in addition to the great joy satisfaction that all the participants appear to be getting from the program, scientific research studies will demonstrate the mechanism of responsiveness and hopefully clinical improvement.

Dance appears to provide a number of benefits to those living with Parkinson's disease which affects seven million people world-wide including approximately 100,000 in Canada and a million people in the United States. It has been established that dance improves characteristics like balance, gait, posture and other physical measurements beyond the social joy and satisfaction from what is in essence a group and social undertaking. Studies are underway to try and determine what the dance does to the brain and the mechanisms by which improvements may occur and whether or not they are sustainable and may be an important adjunct to commonly used medication therapies that are not without their problems.

It has been well known for many years that those living with Parkinsonism can improve their gait by listening to rhythmic marching-type music and some have learned to use ear-phone-directed march music from iPods and other similar devices to provide the compelling rhythmic background to assist in their walking. (Neuroscience and Biobehavioral Reviews: Into the groove; Can rhythm influence Parkinson's disease? Cristina Nombela, Laura E. Hughes, Adrian M. Owen, Jessica A. Grahn, 2013. http://www.ncbi.nlm.nih.gov) In my own practice I have often taken my patients with such movement disorders and while walking with them up the corridor outside my office I hum loudly a well-known John Philip Sousa March, The Stars and Stripes Forever which most people recognize. Quite a lot of the patients and the family are amazed how all of a sudden the person who had been struggling with gait and speed would be walking alongside me to the loudly hummed musical refrain. If the result is good I instruct the person or family member to get some recordings of such marches or others if they are ones that resonate and put them on an iPod type device and place the march when the person wants to go for an enjoyable walk, for the purposes of actual exercise, or as one might in a garden or along a neighbourhood street.

If this Parkinson's ballet dance project proves successful it may result in a wide range of programs that bring dance and music to many individuals living with Parkinson's disease and provide a creative and satisfying and in many ways liberating enterprise for them.

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).