A while back there was a headline in the New York Times about a well-known retired politician who was charged with rape for allegedly having sexual relations with his wife. This would of course not have been a story were it not for the fact that his wife was at the time of the alleged event living in a nursing home and experiencing cognitive impairment to a significant degree. The story as it unfolded was the result of her two adult children who were from a previous marriage bringing charges to her husband because it was felt that being afflicted with dementia and being deemed by her physician as “incapable” of providing consent to the intimate act, that he would therefore be liable for the criminal offence of rape.Many who heard the story were shocked and astounded that a husband was not able to have sexual relations with his wife because she was living with dementia even though there was nothing to suggest that he was acting against her wishes or with force or coercion. The usual legal measure of consent was the one usually reserved for the giving of consent for a medical condition rather than for an act of sexual intimacy which had it occurred in the couple’s residence prior to her being admitted to the nursing home would not have resulted in what appeared to be quite a scandal. As it turned out the husband was acquitted of the charges on what was in essence a technicality in that no one had actually witnessed the act on which the charges were laid and the evidence obtained was at best indirect. The importance of the case was not however lost on the legal profession and on those caring for those living with dementia. There were many who came to the defence of the intrinsic right of those whatever their medical conditions and their cognitive function to be able to participate in and enjoy the benefits and satisfactions of sexual intimacy whether at home or in a nursing home with those with whom they wish to share this precious physical emotional connection. Maybe the time has come for people to express in the same way what they indicate as their wishes for medical treatments to those who will make decisions on their part that they wish to be able to participate in sexual intimacy with those that they have done so in the past or with whom they have indicated—whether in writing or communication—so that those perhaps who do not understand the importance of sexual intimacy or who have value systems that belittle the importance of such activities in one’s later life or when one’s cognition may not be “normal” can still enjoy the wonderful attributes of sexual intimacy.
Michael Gordon's blog
One of the great things about the history of medicine is how new ideas and approaches to care replace those that were previously the "gold standard" fall by the wayside and are replaced with newer and more effective treatments. Sometimes what becomes the new "gold standard" appears so counter-intuitive or "off-the-wall" that it takes time until the evidence grows that demonstrates its new role in the hierarchy of medical treatments. If someone would have told me, when as a youngster watching my father eat soda crackers and milk and consuming Tums® on a relentless basis for years, would be replaced by more definitive treatment I would have been surprised. When the first H2 antagonists came into being, they appeared miraculous—and the PPIs—just about did away with routine ulcer surgery.
As a young internist a good part of my practice was providing pre-operative consultations for those going into ulcer surgery—the procedures ranged from simple to complex but all but those for emergency bleeding were based on somehow decrease the acid production by the stomach, based on the belief that it was excessive acid that was producing the symptoms and the ulcer. I recall the first rather young patient I saw pre-operatively for proposed ulcer surgery, who had not been given a trial of what was already changing the landscape for ulcer disease, an H2 antagonist. When I suggested to the patient that rather than having the surgery she should seek the advice of a gastro-enterologist for such H2 antagonist (Tagamet® the first product on the market) medication, the surgeon was furious—and literally told me he would never refer a pre-operative patient to me again—and so he did not—but within a few years there were virtually none to refer for these procedures. If someone had suggested that within a few years, peptic ulcers would be eliminated by a one week course of combination antibiotics combined with a week of a PPI, because of some yet as unrecognized bacteria that thrived in the stomach and caused these ulcers, one might have been accused of some hallucinatory condition—and yet that is exactly what happened—another miracle of modern medicine.
On the other hand sometimes medications that have withstood the test of time become replaced by newer therapies, but the loss of knowledge about the older medication, decreases the ability of physicians to relieve symptoms as the new medications do not achieve all the desired goals. Thus is the case with digoxin, a drug which I learned about and practiced using using to great effect because of my age and the fact that my earliest training in medicine occurred in Scotland. I was privy to the new advances in the treatment of heart failure with the introduction of the novel, potent and life-saving furosemide (Lasix®), but for the atrial fibrillation and normal sinus rhythm heart failure symptoms, digoxin was the mainstay of treatment. Those of us who grew up with this drug welcomed the advent of the serum digoxin level to help guide us through treatment by alerting us to potentially deadly serum levels, and the "pearls" we all learned about the drug's side effects signs such as "if a Dundonian (resident of Dundee Scotland where I trained) goes off his Angus beef or fish and chips and is taking digoxin—he is likely digoxin (as we called it dig) toxic.
Most contemporary North American younger physicians have had little or no experience with digoxin as newer alternative treatments have replaced the drug—although none have the rate controlling combined with inotropic benefits of this medication. Recently, as part of the exploration of special medication approaches in the realm of palliative care, a small group at Baycrest were reminded that sometimes, digoxin can have a beneficial effect during the latest stages of terminal heart failure, when other drugs were no longer effective. It can help relieve what is often very disturbing dyspnea without the sedative effects of opiates which is often used in such conditions.
A report in the Annals of Long-term Care, describes the two cases of patients with terminal heart failure, whose extreme symptoms were ameliorated by judicious use of digoxin and had a profound and important impact on their last weeks and days of life. Neither of them had ever been exposed to digoxin as it is not part of the usual contemporary repertoire of treatments for end-stage of terminal heart failure—either as a specific treatment or as it was in these cases, as part of the palliative care approach to symptom management. The article was published in the August issue of the Annals of Long-Term Care.
For those of us who work in long-term care where we are often confronted with late-stage and terminal heart failure, it is worth considering digoxin as part of our palliative symptom management repertoire.
I was the honoured speaker for this lecture series endowed in the Name of Miriam Friedman ben-David, a well-known medical educator who had close ties to the University of Dundee which is my medical school alma mater, although when I graduated it was still part of the renowned University of St. Andrews.
When I graduated from medical school in 1966, geriatrics was already one of the medical subspecialties in Scotland and I recall how much I enjoyed my rotation through the geriatric unit. The instructors were marvelous and at a time of open so-called Nightingale wards, in the evenings it was common for a whole ward’s worth of older women to be sitting in a circle, knitting and drinking tea about a pot-bellied stove in the middle. Think what a fire marshal would say about that these days! It was very homey and the staff were very attentive to these patients, some of whom as would be the case today suffered from some degree of Alzheimer’s disease. In those days the term was not really used yet and if a woman had problems with forgetfulness and other cognitive features of dementia, the doctor or nurse would often say, “Ach, it’s all right, she’s just a wee bit dotty.”
I visit Dundee on a period basis for reunions and for professional exchanges. It is lovely to share experiences with geriatrics in Scotland vis a vis what we have in Ontario as a reflection of Canada. Scotland, as part of the British National Health Service (NHS), has of course a publicly funded universal health care service—in fact it was the first, the pioneer of universal health care systems that became in many ways the model for many others especially in Commonwealth countries—with Canada’s taking some points from the NHS.
Like all health care systems, it has many positive points and some negative points and like most systems it has its proponents and its detractors. Also like systems everywhere including Ontario, and Baycrest as one of its prime geriatric centres, most of the deliberations and complaints by providers and consumers are related to the shortage of funds to do everything that might be necessary to provide for quality care for elders living in the community and those in long-term and acute care facilities.
But as a system of aged care (as they often call it rather than geriatric care)—the comprehensive nature of the system, even if always somewhat short of optimal funding, is one of its special features. Many of the components of geriatric community care that are not covered in Ontario, such as rehabilitation services, are all under the NHS umbrella of funding in Scotland. Doctors in general are on salary so that the issue of fee structures is not much of an issue as they are occasionally (as right now in Ontario); however there are salary disputes from time to time, but medical strikes are not possible as they are not possible here.
On this visit I did not get much of a chance to tour in any detail any of the geriatric facilities, but did get a chance to talk to members of the geriatric and palliative care faculty at the University of Dundee who also served in the NHS.As in the past, I was taken with their passion and devotion for those they care for. My visit on this occasion was very short and part of it, beyond my lecture on end-of-life dementia care, was speaking to two nurses doing geriatric research projects. I also had the opportunity to do a workshop with 10 very enthusiastic medical students doing a geriatric rotation on the origins of what is called Evidence Based Medicine (EBM) which in many ways had its developmental genesis in McMaster University in Hamilton—a close neighbor and geriatric academic colleague of ours.
The visit was terrific with special social aspects including a celebratory dinner after my lecture in what is called the “Principle’s House”—a beautiful site with many marvelous paintings of well-known Scottish artists of the last two centuries. But the culinary highlight actually occurred a few days earlier while I was visiting one of my classmates and his family who are quite dear to me—we went out and rather than a “take-out” had a sit-down traditional, classical, sumptuous fish and chip dinner with an extra order of “what pudding” which is also a traditional Scottish deep friend dish consisting of meat and fat, bread and oatmeal formed into a large sausage—indescribable and something that brought back many culinary memories of my almost six years in Scotland, first as a medical student and then as an intern.
The lecture was a very much appreciated honor to me on top of this glorious recollection of all the years and many stories I recall from Scotland and the homage I pay to not just my training and teachers but to the wonderful care that they provide to their elderly citizens.
This blog was originally posted on the Baycrest staff blog.
Dr. Michael Gordon is currently medical program director of Palliative Care at Baycrest, co-director of their ethics program and a professor of Medicine at the University of Toronto. He is a prolific writer with his latest book Late-Stage Dementia: Promoting Comfort, Compassion, and Care and previous two books being Moments that Matter: Cases in Ethical Eldercare followed shortly on his memoir: Brooklyn Beginnings-A Geriatrician’s Odyssey. For more information log on to www.drmichaelgordon.com
If one is in medical practice long enough it sometimes seems like that sense one gets when sitting in a waiting room and picking up a years old copy of Time® magazine and not realize that it is years out of date, as many of the stories seem to be the same or very familiar. I have a 30 year old tuxedo which fortunately comes in and out of vogue cyclically which allows me ( as long as appropriate size accommodating alterations have occurred) to keep wearing it without my feeling that I am “out of fashion”.
The challenges that face all practitioners and family members who care for those living with dementia are myriad. Cognitive impairment and behavioural issues top the list of concerns expressed by families, with the second layer being impairment of activities of daily living which requires assistances in many basic domains. Over the years the approaches to care especially for those with the range of behavioural issues which might range from withdrawn apathy to agitated aggression and disruption of other people’s function and privacy. The latter often becomes a problem in congregate living situations and may lead to crises when the facility expresses concerns about the ability to continue care of others’ lives are negatively affected.
In this question for methodologies to decrease these negative or as recently renamed “reactive” behaviours, the typical “medical” approach has generally been pharmacological. This has spawned a whole drug-based industry including regulatory attempts to modify and curtail the use of such medications because of evidence-based negative consequences of the medications which are often additional to the risk of the underlying disease itself. Psychologists, social workers, recreational and music therapists have all added over the years various modalities of interventions with the hope that they might individually or in combination might more safely decrease the degree of behavioural problems without compromising the person’s function, dignity and quality of life.
With this in mind it was refreshing to see recent references to programs in which “doll therapy” was being utilized as a modality to address some of the behavioural manifestations of those living with dementia living in long-term care facilities. The article that brought the program to mind was recently published in the Feb. 3, 2014 web-based article from Nursing Ethics where the focus of the article was on the ethical implications of the intervention more that the efficacy and clinical impact of the use of dolls in BPSD and other manifestations of those living with dementia.
It is of interest that the focus of this particular article was on ethics rather than clinical outcomes. One can of course implicate ethics in all clinical interventions in terms of goals, benefits and risks as well as the foundational principle of ethics; autonomy, beneficence, non-maleficence and justice. When one thinks of alternative pharmacology based interventions for BPSD it is hard to imagine how they would measure against interventions whose adverse reactions or almost exclusively of an “ethical premise” rather than manifestations that can affect the clinical outcomes of the disorder with significant adverse cardiac and other documented potential side effects as well as movement disorders. Other articles on the subject of doll therapy and other alternative non-pharmacological modalities of intervention for BPSD seem to be less focused on the ethics than on the efficacy of the intervention and the multiple benefits to the general emotional well-being of the individual beyond the issue of BPSD.
One of the long-term care facilities to which I provide ethics workshops for the staff that cares exclusively for those living with dementia has had a doll therapy program for many years. At Bloomington Cove LTC facility, the range of doll-based interventions includes individual provision of dolls as well as programs in which groups of residents take part in various forms of care-provision and nurturing activities to the dolls which are of a soft and “cuddly” characteristic. The director of the facility believes strongly that the doll-based intervention brings out the natural and at times vivid desire and latent abilities and wish of almost exclusively female residents to express affection, physical nurturing and emotional attachment that clearly is stored in the repository of their brains and personalities which when tapped release positive feelings and actions which can replace the often disruptive reactive states that BPSD often elicits.
The ethics focus on this intervention which is not new is encapsulated in the Nursing Ethics article which says, “The use of doll therapy for people with dementia has been emerging in recent years. Providing a doll to someone with dementia has been associated with a number of benefits which include a reduction in episodes of distress, an increase in general well-being, improved dietary intake and higher levels of engagement with others. It could be argued that doll therapy fulfils the concepts of beneficence (facilitates the promotion of well-being) and respect for autonomy (the person with dementia can exercise their right to engage with dolls if they wish). However, some may believe that doll therapy is inappropriate when applied to the concepts of dignity (people with dementia are encouraged to interact with dolls) and non-maleficence (potential distress this therapy could cause for family members). The article continues with, “This article suggests that by applying a ‘rights-based approach’, healthcare professionals might be better empowered to resolve any ethical tensions they may have when using doll therapy for people with dementia. In this perspective, the internationally agreed upon principles of the United Nations Convention on the Rights of Persons with Disabilities provide a legal framework that considers the person with dementia as a ‘rights holder’ and places them at the centre of any ethical dilemma. In addition, those with responsibility towards caring for people with dementia have their capacity built to respect, protect and fulfil dementia patient’s rights and needs.”
In contrast to the ethics focus approach to doll-based therapy another article, published by Carefect, focuses primarily on the beneficence (benefits) impact of such intervention as follows, “Doll therapy provides many benefits for Alzheimer’s patients that engage in it. One of the most important benefits of doll therapy is that it provides Alzheimer’s patients with social interaction and allows them to have the chance to care for someone again instead of just being the person that is being taken care of. Many seniors are calmed by their doll and it can often create a distraction for them from upsetting events. Having a baby doll often reminds Alzheimer’s patients of fond memories of when they were a new parent which can have a very positive effect on them. Many seniors will enjoy rocking their baby doll which can also help them fall asleep if they have trouble sleeping themselves. Family caregivers looking for activities for their loved one can try purchasing baby doll clothes or even actual baby clothes for their loved one to put on the doll. Many of the lifelike dolls are big enough to fit in newborn clothing, so family caregivers can purchase a few outfits for their loved ones to put on their doll. Family caregivers can even consider buying a stroller for the doll so that their loved one can push it around the house and get some exercise while playing with their doll. Many seniors enjoy singing to their doll, so family caregivers can join in or encourage their loved ones to sing on a regular basis. The most important thing though is to make sure that all family members are educated on doll therapy. Many people may find it odd to see their elderly loved one playing with a doll, especially if they were not educated on the way doll therapy works and the benefits of such therapy for people suffering from Alzheimer’s or dementia.”
What does this mean for those responsible for providing as much as possible sensitive, client-focused, beneficent and the least harmful interventions possible that will allow those living with dementia to experience the least conflict and anguish in their emotional experiences? This should be while promoting as much as possible some semblance of quality of life and emotional connectivity with their world, however distorted or limited as it might be because of their cognitively impaired state. Although as in all aspects of medical and other health care interventions the ethical implications cannot and should not be ignored, we in the healthcare professions must be careful to make sure that our approach is sufficiently balanced with the focus always on the well-being or those we care for and the realization that in a complex world of caring for those with dementia, there may always be some question remaining in the realm of ethics, but these must not supersede the real daily beneficial impact that may accrue to those we collectively care for. Doll Therapy as well as the wide array of alternative therapeutic interventions should be high on our list of considerations as we struggle to make the life of those we care for whose scope of enjoyment and social participation may be limited by their disordered brain functioning.
This blog was originally published at: http://www.annalsoflongtermcare.com.
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”.
This article was first published on www.bestthinking.com
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/
I have for many years enjoyed my family name, Gordon, and all the connections I can make with it. I learned when I was quite young, from my paternal grandfather that the name had been ours for many generations and had not been changed as had those of my childhood friends. I had stored that knowledge deep into the recesses of my memory. When I decide to study medicine in Scotland, the name became a talking point, as everyone assumed that with that name I must in fact have Scottish ancestry. I could only explain that the name was genuine, unsullied by arbitrary or deliberate alteration by American immigration authorities when my grandfather arrived from a small village in Lithuania.
It was only some years later, during my first trip to Israel that I read a history of Russia by a Scottish historian. There I found a reference to the likely origin of the Jewish Lithuanian and by dint of migration Russian Gordons. It was Peter the Great's desire for territorial expansion that led him to hire a militarily brilliant Scottish mercenary general by the name of Patrick Gordon. It was General Gordon, who successful in many Russian expansionist battles ultimately became a close friend and confidant of the Tsar. A well detailed biography of Peter the Great by Robert Massie explains how Gordon's death was mourned by the Tsar as a loss to his empire. During the later emancipation process, when Russians adopted family names, it appears that my ancestors, in deference and regard to the Tsar's great friend took on the name Gordon. Although there are varying iterations on the origins of that name in Jewish Russian/Lithuanian history, this narrative has always seemed to me to be the most credible.
During the pogrom-dominated anti-Jewish period in Russia around the turn of the 20th century many Jews left Russia, including my ancestral village of Eysheshuk I near Vilna and made their way to the United States, then British Palestine and South Africa. When I was sitting my oral examination in Midwifery in Dundee Scotland, then still part of the University of St. Andrews, my examiner was the "prof" (professor and head of the department) himself. As I sat down he said, "You're the Yank" in his mellifluous Scottish dialect which by this time had become music to my Brooklyn English ears. "Surely" he continued, "with a name like Gordon, you must be Scottish." I responded with a "yes and no, but if you would like to hear the story, I would be happy to tell you." He nodded yes and with my eye on the clock above his head, ticking out the 10 minutes of oral examination time, I recounted the tale. With 30 seconds left, he interrupted with "Oh dear, Oh dear, we're running out of time, followed by 'give me three symptoms or signs of eclampsia'". I knew the answer "cold" as it was one we all prepared for knowing how important the subject was. As I turned to leave the room I saw him write a 10 and say, "very good, very good" in broad Scottish.
That event resulted in a prize in midwifery much to the shock and surprise of my classmates as it was not my "strong" subject. With the 500 pounds I spent 5 months doing midwifery and gynaecology at the Rambam Hospital in Haifa, which resulted in epiphany in my life which circuitously resulted in Aliyah some years later. My return to North America and settlement in Canada is complex but I have always responded to the name Gordon with the question to determine if the person was perhaps a landsman and if they are aware of the history of the name. This has resulted in many warm interactions and sharing of family histories.
This was personified on a recent invitation to Vancouver to attend a conference as a presenter. After the acceptance I received a request to attend a meeting of the newly established Vancouver chapter of the Israel Medical Association, having been involved in the Toronto chapter for many years. Once accepted I received an email form Dr. Paula Gordon, a Vancouver radiologist who trained at Mt. Sinai Hospital early on in my career as a clinical teacher.
At the IMA meeting, Dr. Marla Gordon, an elder-care focused primary care physician at whose house we were meeting introduced herself and reminded me that years earlier she had asked me via-email about my knowledge of the derivation of our name. Also at the meeting was Dr. Rhona Gordon, a family physician with a major focus in Obstetrics and newborn care, is married to the president of the Vancouver IMA. We spent much of the post-meeting time comparing our family histories and our understandings of the movements through Europe and North America of our respective Gordon families. We concluded the we were for sure Landsman (a Yiddish term for people of the same geographic area—which in 18th and 19th century Eastern Europe usually meant the same village or district. I could add these three to other Gordons living in Israel who also I knew as émigrés from Eyshoshuk or other parts of Lithuania.
This experience reminded me of the importance of keeping people with cognitive impairment as grounded as possible with ideas, events, people and associations that they can relate to and which are meaningful. The use of photographs is very important in helping those living with dementia relate to important people and events in their life. The nice thing about the use of photographs is that they can be shown and discussed time after time without the person getting bored as they may have little recollection of having looked at the pictures recently. (/article/photography-many-windows-memories). It has been shown that familiar and personal music is also useful to those living with dementia and the fact that the person can related to their music has been demonstrated to bring back important memories that may result in revitalization of the person even within the context of dementia and may also be useful when dealing with behavioural issues such as agitation (http://www.youtube.com/watch?v=Fw7Y78aqf_I).
What could be defined and an expansion of one's historical connections also resulted in a recognition of the importance of individual roots and relationships. As physicians dealing with dementia we should also try and explore and find those aspects of our patient's lives and experiences with which they can connect, and if we can add to or enhance that connection, all the better for a fulfilling and meaningful and ultimately more successful clinical experience—for the patient and for the physician.
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."
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.
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).
There are pros and cons of the new digital world. On the one hand for physicians the transmission of important medical information, especially about advances in medicine and concerns about well-established or novel treatments assists all of us in the world of health care to be as “up-to-date” as possible. Anyone in the field recognizes that there is an apparent constant Rocky Mountain avalanche or Hurricane Sandy flood of new information coming from endless sources ranging from the most respected- evidenced-based medical journals to free-wheeling, shoot-from-the-hip internet news sites that churn out information so quickly that there is often little time to attempt to verify the sources of the information and when it catches on the distribution is faster than a speeding bullet through the so-called “going-viral” process.
In reality, true, meaningful and reliable progress in medicine is usually slow and incremental; eventually there is what seems at times to be the slow tortoise-paced movement in positive and meaningful directions. Physicians and consumers of health care information (doctors call them “patients”) are routinely subjected to claims of “breakthroughs”, “major steps forward” and “almost miraculous” advances for one confounding medical condition or another. It is often claimed thatsomeone, which may mean the corporate pharmaceutical industry, the conservative “self-serving” medical profession and politicians who are “in the pay of” one of these mega-wealthy interest groups, that are repressing these breakthrough advances because of a threat to their financial interests or their “monopoly” on the health care industry. The current penchant for conspiracy theories promotes the suspicion held by many members of the public that if there is something missing in their health care, it is due to lack of useful information being purposely withheld or squelched by "vested interests."
When it comes to the categories of serious and often life altering or life-threatening illnesses, there is often an attraction to those for whom either intentionally or unintentionally misleading the public can be a major issue and for some can lead to devastating results. As a physician whose professional and academic interests have covered Alzheimer’s disease and other causes of dementia, end-of-life and palliative care and medical ethics, it is not hard to come across an array of individuals and situations in which it is hard to not consider the concept of mythology if not more accurately charlatanism. With all of such situations it is often the marketing of the product or procedure that becomes the goal of those for whom the potential for vast financial gain becomes a major issue—this can ultimately lead to at best misjudgement or excessive good intentions or naivety and at worst actual fraud.
A few examples to illustrate the history of mythology and marketing in medicine with a focus on aging and dementia and "incurable" illnesses is worth considering. Recently the son of one of my patients whose is living with fairly advanced dementia of the mixed-Alzheimer’s-vascular type wanted to know about my opinion of the use of coconut in its treatment. I admitted that I had not heard of that but he had his internet print out in his hand and right then and there we logged on to the report including the YouTube depiction of the wife of the patient whose clinical condition of dementia was vastly improved by the eating of grated coconut and then the “medical”: commentaries that followed. I could understand why a family member of someone with as serious condition as dementia would be mesmerized and hopeful that such a discovery would be beneficial for his suffering mother. I did a further in depth review of the available literature which mainly referred back to the initial YouTube presentation. All the credible commentators agreed that although interesting there were no proper evidence-based studies that had been done to verify this one in essence case-report. A robust review of the claim and the medical supporting evidence can be found on the website snopes.
Another very popular “natural” purportedly natural preventative treatment for dementia that has been very popular for many years is Ginkgo Biloba, on which according to a 2009 Consumer Reports (CR) wrote that Americans spent in 2007 about $107 million according to the Nutrition Business Journal. They're probably hoping to enhance memory and increase mental focus, claims often made for Ginkgo.
According to the article in CR; “the results of a major trial published in a 2008 issue of the Journal of the American Medical Association suggest that taking Ginkgo Biloba to prevent cognitive impairment or dementia is probably a waste of money. Researchers followed more than 3,000 people age 75 or older for roughly six years—the largest Ginkgo-dementia trial ever. “The supplement did not decrease incidents of Alzheimer's disease or other dementias in people with normal cognition or in those with mild cognitive impairment. Bottom line : Ginkgo Biloba supplements can cost about $200 a year. Save your money. An accompanying editorial stated: "users of this extract should not expect it to be helpful. And while the supplement is widely considered to be safe, there is some concern about an increased risk of bruising, bleeding, and potential drug interactions . If you intend to take the supplement, discuss it with your doctor first.” The same negative results were reported in a more recent article : Ginkgo Biloba no better than placebo in preventing dementia published in the December 2012 edition ofMenopause International.
One only has to wander around any pharmacy’s health supplements section or shopping mall’s health and nutrition outlet or to one of the “big box” stores like COSTCO® and you will see bottle after bottle of nutritional brain enhancing supplement being bought by the truckload. As physicians I think we have a duty to inform our patients that there is no evidence for any benefit of these products rather than take a very common posture which is, “if it can’t hurt, what’s the difference?”
Money saved on useless and heavily marketed supplements can be used for more beneficial purposes, even if to support a worthy charitable cause.
This article was originally published online at www.clinicalgeriatrics.com.