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The Need to Feed—A Powerful Force

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Abstract
Food is clearly one of the essentials of life. Most people in the more developed world consider food as much for its culinary delights and aesthetics than for its nourishment attributes. Eating and feeding is one of the first experiences among virtually all mammals and for humans the tie to feeding/nurturing process starts with the first suckle and ends with either last swallow—or when medical technology joins the complex end of life process—when the last drop of tube feed is administered. For many family members the differences between eating and drinking which is associated with the pleasure of the first maternal feed and a life-time of socially mediated eating, and artificial nutrition and hydration as only a matter of interpretation—for others there is no comparison. How this plays out in end of life situations varies for many reasons: physicians can help families make decisions about most feeding situations to help the family's interpretation of their loved one's preferences.
Key Words: End of life care, tube feeding, artificial nutrition and hydration.

The mothers of all living species appear to have a biologically determined need to feed their young. For those interested in the natural world, among its many wonders is the extent to which this applies and the care taken in feeding the young—often with careful maternal deliberation for fair distribution of food, and at times, the care taken with those in need of preferential feeding.

For humans it is a given, virtually from birth, that the desire to be fed as expressed by a newly born infant is matched by the desire to respond to that visceral connection by the mother—so much so that failure to respond usually is an indicator of some serious aberration or illness that interferes with what most would consider the "natural" order of such a relationship.

This same fixation on the importance of food in human relationships often plays out in the determination that spouses and children express when it comes to feeding a frail, failing elderly loved one—irrespective of whether the desire or ability to eat normally or at all has been undermined by a medical condition. In my own experience as a geriatric medical specialist with a special interest in late-stage dementia and, more recently, palliative care, such an inborn drive to feed one's loved one is sometimes taken to inordinate lengths.

Some scenarios appear to repeat themselves, even if the individual's circumstance appears to differ. A common example is a person with end-stage dementia where cognitive abilities are severely compromised. This condition is often associated with impairments in the desire to and/or ability to eat despite often very time-consuming and almost heroic efforts by family and professional caregivers.

Often the question of artificial tube feeding is raised, but depending on the situation, rejected by the family—often rightfully so—because discussions or advance directives (living wills) made by the person rejected such an intervention.

Many in the field would concur with such a decision, as the feeding would provide little if anything in the way of comfort, would not decrease the possibility of abnormal aspiration (inhalation) of food and would add virtually nothing to the quality of the last stages of life.

We have collectively learned that what is called "comfort feeding," by which even small, nutritionally modest amounts of favourite foods provided by a loved one may be the most humane way of demonstrating the devotion associated with feeding, fostering the sense that one's loved one is not being abandoned or even worse "starved to death."

In another common scenario, a patient in a hospice (palliative care unit) with progressive malignant disease often has no appetite and is losing weight as a consequence of the illness. Some families become obsessed with feeding their diminishing loved one, becoming desperate in their quest to find a way to increase eating, often bringing delicacies from home in the hope that something will tweak the appetite. In extreme situations, the family member is almost "force feeding" their loved one with the hope that the right food might improve or even reverse the inexorable course of the terminal stage of the illness.

Sometimes the only thing the dying patient may want is something as simple and flavourful as ice cream—I am a big believer in ice cream as suitable for end-of-life care. But you must choose the right preferred flavour, and not worry about whether it is nutritious or not. If it's enjoyed and savoured—and that is the measure by which to judge – it may be one's last act of kindness to a beloved family member who is in the process of dying.

This article was originally published online at http://www.cjnews.com.

Why Families Should Consider Forgoing CPR

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It happens a few times a month: I get a request for a meeting with a family struggling whether or not to provide a do not resuscitate (DNR) order for a frail and aged family member. Often the patient has dementia, and, therefore, the decision falls to the formal substitute decision maker (SDM), in keeping with the Health Care Consent Act in Ontario (and comparable legislation elsewhere). It's an enormous burden for many families, and the decision to comply with the request for a DNR order is often fraught with great emotional pain and reluctance.

As a health care provider and ethicist involved in conversations with families, I often hear the refrain, "I just can't bear the thought that I am responsible for my father's death. He was such a fighter. He survived the Holocaust and now this, giving up like this. I just can't bring myself to do it." There may be more than one child, and sometimes they share responsibility of being the SDM, which means both parties (or more) must agree, which could lead to family conflict and strife.

The ultimate question for families is what does CPR actually offer to their loved ones, and does withholding such intervention through a DNR order make the children (assuming they provide the order) complicit in the death of their loved ones, which is a heavy burden to carry.

Many may not realize that the development of CPR in the 1960s was meant for a very select group of cardiac arrest victims who were otherwise usually well and whose hearts suddenly stopped, but had the wherewithal and cardiac reserve to withstand CPR, which, if successful, returns an otherwise relatively healthy heart to its intended pumping function.

Over time, the criteria for implementing CPR expanded to less-well individuals, with some occasional successes. But studies of various populations found that frail elderly individuals—those who fulfilled in most jurisdictions the criteria for residence in nursing homes—did not have the heart or bodily reserve to withstand the rigours of CPR. Rather than having a "cardiac arrest"—the sudden, unexpected cessation of heartbeat in an otherwise medically intact person—what occurred was in fact death, rather than an "arrest."
What does this mean for frail elders in nursing homes, since immortality is not part of the medical repertoire? One is going to die from a combination of age and all the physical and neurological conditions that afflict those who live long enough, which often include dementia. It's not that dementia itself is the barrier to successful resuscitation. It's that dementia in the frail elderly is usually a marker for a collection of problems that make it most unlikely for someone at the end of life to survive and recover from what is in many ways a trying and almost assaultive intervention whose outcomes are in most cases very bleak.

The other concern about all the attention given to CPR and the emotional turmoil about deciding on a DNR order is the elimination of the very human activities that might otherwise occur when death without CPR is expected and anticipated. The intrusion of CPR is often accompanied by the transfer from a nursing home to a general hospital. This disrupts the potentially peaceful passing of a loved one, which is sometimes associated with prayers and other rituals, depending on cultural or religious practice. Holding hands and personal expressions of love are replaced by the often traumatic intervention of strangers and technologies that distract from the humanity of what in most cases will be the death of the person in any event. CPR creates a medically focused event that sacrifices what may be the last chance for a family's expression of humanity and love.

This article was originally published in the December 22, 2016 issue of the CJN.

Further Reading

  1. Gordon M. Assault as Treatment: Mythology of CPR in End-of-Life Dementia Care. Annals of Long-Term Care: Clinical Care and Aging. 2011;19(5):31-32.
  2. Schafer A. Deciding when life ends. The Ottawa Citizen. February 8, 2008. www.canada.com/ottawacitizen/news/story.html?id=6af86b76-32ba-4c41-b11c-...<redir.aspx?REF=LbTtdqvjyWGkMsaVANVz8Hs_unV55CS3e5aUspFEIwWSW4D-sTnUCAFodHRwOi8vd3d3LmNhbmFkYS5jb20vb3R0YXdhY2l0aXplbi9uZXdzL3N0b3J5Lmh0bWw_aWQ9NmFmODZiNzYtMzJiYS00YzQxLWIxMWMtMjJkZjc3NGQ3NGQ0> [3]. Accessed January 13, 2011.
  3. Gordon M. In long-term care, the "R" in CPR is not for resurrection. Ann R Coll Physicians Surg Can. 2001;34(7):441-443.
  4. Ehlenbach WJ, Barnato AE, Curtis JR, et al. Epidemiologic study of in-hospital cardiopulmonary resuscitation in the elderly. N Engl J Med. 2009;36(1):22-31.
  5. http://www.rmmj.org.il/userimages/408/1/PublishFiles/418Article.pdf

Should We Keep Meeting Like This?—The Place for Reunions

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Reunions are unusual and sometimes bizarre phenomena. It is curious that people seem to be drawn to meeting over periods of many years or even decades with people that they may or may not have been close to during some period of their formative years of education. Think about the likelihood that at a high school reunion, you might meet more than a few people of significance in your life or with whom you have even the remotest interest in knowing what they have done during the intervening years. For university or post-university reunions one might imagine there might be a greater chance of congruence of life experiences and the possibility of a more compelling reason to know what life has done to the group individually and collectively.

I recently attended my “50th” medical school reunion in Dundee Scotland. Though born American I decided to “study abroad” as a means to satisfy my desire to travel—something I recognized from a 6 month stint as a university student wandering through Europe in my “junior–3rd year”. That 6 month stint stirred my determination to study overseas and as it turned out I was fortunate enough to be accepted into an English language first quality medical school in Dundee Scotland, which at the time was the clinical training resource to the renowned University of St. Andrews. It subsequently separated from its “mother ship” and became the University of Dundee that is the home of what has become a highly regarded medical school.

I have not missed any reunions, which started with the 10th and have continued every five years since then. At the 10th our guest speaker was our chief of medicine—Sir Ian W. Hill who was at that time the physician to the royal family when they were in Scotland that usually occurred at one of their favourite retreats, Balmoral Castle, with its beautiful surrounding hills and woodlands. Sir Ian, who was one of the greatest lecturers I have ever encountered—able to mesmerize a lecture hall full of medical students with his stories of illness and disease--cautioned us to stop meeting after 50 years as there might be few participants because of death and illness.

The reunion was a treat—it was in Dundee rather than as previously in St. Andrews; my youngest daughter joined me, having been at one about 15 years earlier and it fulfilled what reunions do—reminded us of our roots, of our history and gave each of us (we were only 25 classmates out of a class of 70—plus in many cases spouses)—a chance to reminisce about our lives and what seems to be the core of the attraction of reunions, to recount our recalled and shared experiences.

Even though many of the same stories were shared at previous reunions, recounting the stories of escapades, travel, parties, shared flats, our idols and failures as teachers and sadly our classmates who had died in the interim period—the whole experience was a mixture of rollicking fun, uplifting narratives and sad recall of dear classmates who had left us—with this reunion having lost three classmates in the previous 6 months—ones with whom I was especially close.

Like many things in life that we do, there is no compelling explanation or objective benefit in a reunion—but since it seems to be almost universal among so many people, it must resonate with those of us who wish to and usually attend. Reliving and sharing our past, confirming our recollections and in some ways fulfilling the curiosity about “what happened to …..?”Although Sir Ian counseled us against going beyond 50—as we were preparing to leave, a small group of us, including myself, planted the seeds for perhaps the next—55th reunion—I hope so and hope I can attend.

This article will be published online in January 2017 at http://www.cjnews.com/

Dealing with Family Strife

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One always hopes that as medical practitioners, we will be able to focus our attention on the medical issues faced by seniors and help families cope with the fears, disappointments and tragedies that are faced by loved ones in the midst of what are often life-altering illnesses.

Throughout our initial medical training, and most often during post-graduate training programs, the primary focus in general is: what is the "best of medicine" and what does "evidence-based medicine" tell us about treatment decisions and their ultimate impact on health, well-being and, often, the likelihood of death? This is particularly the case in the care of the older adult—whether in geriatric medicine or eldercare.

What is often surprising and baffling, especially to younger physicians, is the situation where the core of what appears to be the challenge in care provision is negatively tinged by what might be called family "strife." At times, however, a more appropriate term would be venomous, hateful actions—actions that ultimately will be destructive to the family fabric.

This should not be surprising to anyone who has even a modest understanding and familiarity with the world of literature—whether limited to English works, or more broadly including European or other literature.

Those medical trainees who have worked with me have in all likelihood heard me either seriously or humorously say, "If I were king, all first degrees would be in English literature." Or when there is a complex family dynamic playing out, I might say, "It's King Lear—if you have not read it ever or lately, read it or read it again—it's all there."
Sometimes I feel like that great American comic Jimmy Durante, who was quoted as saying, "I have a million of them, a million of them," referring to his often delectable jokes. According to an online biographical history, it has been said that "I've got a million of 'em" is what Durante (1893-1980) often said after telling a corny joke. Durante was credited with "I've got a million of 'em" in a 1929 newspaper story.

I say this when referring to complex family situations in which what appears to be the worst in human interactions seems to be playing out. Often the issue is related to money (or property), and if one is in a position to hear the story from all the parties, it often becomes clear that, for whatever reason, the pot has come to a boil at this juncture of life. This is usually because the flame heating the water that's not boiling has been on for what appears to have been many years.

Most of us know of such stories, hopefully not in our own families, but it is unlikely that there is a family who is not familiar with a "Lear-like" scenario in someone close to them. Greed, jealousy, hurtful memories, mean-spirited personalities, events that occurred—sometimes decades earlier—that were never resolved or left indelible scars are often the reasons cited for the enmity.

I have had the good fortune to observe that, on some occasions, especially when a parent, in particular, is dying, though it could be another relative, there is the possibility of repairing longheld animosities and bringing long-estranged family members back together. It does not always succeed, but I have witnessed the monumental efforts of health-care staff—especially those in social work, nursing and medicine, although any and all of the health-care staff can be key—in bridging the emotional moat that often separates family members.

It may not always work, but I believe it is always worth the effort. Living with the result of lifelong family strife is often disabling, and the scars that occur and that are left can have long-lasting negative effects on people's lives and their own abilities to have meaningful and binding relationships with their siblings and offspring.

This article was originally published online at http://www.cjnews.com/perspectives/opinions/dealing-family-strife

Beyond Medications for Dementia

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Physicians usually become adept at choosing medications for the complaints and illnesses that patients bring to their attention. Doctors have to become familiar with the common medications that are indicated for the most prevalent illnesses they see, and there are many resources available to keep physicians as up to date as possible on the most effective drugs and what the medical evidence says about indications, side effects, drug interactions and priorities of care at various points in the progression of a patient’s illness. In the elderly, there are often a number of illnesses competing for possible medical attention and intervention.

Dementia is the umbrella term used commonly to describe the cognitive decline that affects many older individuals. It may be due to a number of recognized conditions of which Alzheimer’s is the most commonly recognized, but the effects of blood vessel (vascular) disease are also very common factors in the aging population.

There are some medications for these conditions that affect memory, judgment and behaviour, the symptoms of which may cause great strife in the individuals affected as well as their families. The symptoms often cause immense challenges when it comes to the use of possibly helpful medications. The pharmaceutical products available for improvement of memory and judgment are often helpful in some individuals, but even when they are effective, they do not “cure” the cognitive impairment. They may, however, provide some improvement in certain aspects of cognition and especially socialization and interactive abilities.

Most challenging are the medications available for what are called behavioural manifestations of dementia, so much so that decisions to transfer to protective living environments such as nursing homes may be the result of such behavioural processes. These events may occur periodically and in what appear to be unpredictable outbursts. Although there are medications that are often used under such circumstances, which may be effective in decreasing the intensity of the disturbing symptoms, they—as do all medications—have potentially bothersome side-effects that may limit their efficacy.

During the past few years, the medical and non-medical health-care professionals involved in such care decisions have discovered that a number of non-medication interventions may be very effective and helpful without the risk of medication side-effects. Probably the most well-acknowledged and studied has been the use of individualized music, which has been shown to quell some of the agitations and disruptive behaviour associated with dementia. There are programs through the Alzheimer societies that provide personalized music on small iPods that can be used during episodes of behavioural outbursts.

In addition, there has been an expanding experience of using a range of alternative treatments such as pet therapy and doll therapy. In the latter, agitation, primarily in women, can be calmed by providing a life-like infant doll that brings out the calming and nurturing reactions many older women experienced during their earlier maternal days. Massage therapy and aroma therapy have also been used with good results in certain individuals.

The importance of these alternative therapies is that, unlike medications, they usually do not have side effects that might limit their effectiveness. They often tap into aspects of the person’s residual abilities that bring out what might otherwise be hidden aspects of his or her personality. Of greatest benefit is that these therapies are often provided by concerned and loving family members or dedicated health-care professionals, thus enhancing the social aspects of care that have been identified as being important through the course of conditions responsible for cognitive impairment.

Just imagine listening to one’s favourite music with an affectionate cat on one’s lap, while someone who cares enough provides a hand massage, rather than a dose of a medication that may cause drowsiness, increase the risk of falls and impair the person’s ability to walk securely. It may not always work, but it is always worth a try. So it’s important to be persistent and see what might work.

This article was originally published online at http://www.cjnews.com/perspectives/opinions/beyond-medications-dementia

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Many older patients of mine have metal implants in their limbs following some form of reconstructive surgery. It is the age of the bionic person.

With so many "snowbirds" and with security metal detectors almost everywhere, there is often an expressed concern about whether having a metal implant in the hip or knee might delay you or lead to problems when you pass through airport or cruise security metal detectors.

I recently had a comparable experience when flying, which I do quite often. I had acquired a MedicAlert bracelet, which also is a common accoutrement of many older patients. As I passed through the security arch having already removed all my usual triggers (phone, wallet, belt, watch), the alarm went off—I realized that the Medic-Alert bracelet, whose clasp is such that it is very difficult to open, clearly for safety reasons, was the culprit. I mentioned it to the agent—who took his wand and clearly identified the source of the alarm, and when he finished the rest of the scan, he let me through without any problems.

I was curious and perused the medical literature on the subject, given the high prevalence of seniors with metal in their bodies—part of the contemporary miracle of modern medicine. I recall a time when severe knee and hip arthritis left seniors either completely immobilized or chronically racked by significant, often life-altering pain.
It is not that the surgery is "easy," and it's not always successful, but for many, it can have a dramatic and long-lasting beneficial effect. No less important than the surgery itself is that there seems to be a very flexible ceiling on age—with some very elderly individuals found suitable for surgery—depending on what other medical conditions exist.
Many of the articles that discuss the issue remark on a practice in the past, when patients with metal hardware in their bodies often provided the security agents with letters or cards attesting to their condition. However, it is now felt that these are not needed nor heeded, as there is no way of verifying the veracity of the author—and the backup metal detector or full body scan will do the trick more effectively and assuredly.

What most of the articles on the subject suggest is that the traveller should alert the security agent right up front about the issue rather than waiting for the detector to go off. I thought of having the clasp on my MedicAlert bracelet changed to one that could be more readily opened and closed but decided that the security of a bracelet that could not readily inadvertently fall off was more important than the minor inconvenience of a manual security scan.

Some things, we often say, just "come with the territory." Travel has become more complicated because of issues of security. There is no doubt that the recent tragic bombing of a passenger plane in the Middle East will result in either more intense scrutiny of travellers or some new directives on screening—just when things seemed to be easing up in North American airports.

Medicine has become more complicated because of novel treatments that, although life enhancing or life saving (such an internal heart pacemaker which also has metal wires), may cause some modicum of inconvenience at the security gate when people travel.

This seems to be a small price to pay to achieve both desirable ends—being able to walk unattended through a security gate after restorative surgery, and making sure that fellow travellers are safe in their travels.

Still, during those years when I was studying medicine all this would have been in the realm of wild imagination.

This article was originally published online at http://www.cjnews.com/living-jewish/travel/do-metal-implants-hinder-your-ability-to-travel

 

Where's the Beef?

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I was sitting in a coffee shop next to table with 5 older women. I could hear one of them say to the group, "I am cutting bacon out of my diet—but I do love it once in a while". "Why are you doing that, one of the woman replied?" "I just read that bacon and salami and hamburgers can cause cancer—didn't you see the paper yesterday—it was also on the news last night—it is almost as bad as smoking cigarettes—who would know—I hope it isn't too late as I have bacon at least once a week on the weekends when we go out for breakfast."

It always amazes me how when something is reported in the media, the response ranges from hyperbolic concern by reporters and the public to complete lack of concern by others. It can be very hard for the public, and at times the medical profession to decipher the real implications of the many reports that focus on public health threats from the world around us. I have watched as items such as eggs, coffee, various fats and oils, alcohol, different types of exercise and where we live and what we breathe become the focus of notices to the public to either "beware," "take heed," "change practice" or "just stop what you are doing".

Some public health warnings are real and immediate and often due to the finding or some food item that is being eaten or prepared in "real time" that poses an immediate threat to consumers. A recent example is the warning and resultant steps taken by the restaurant chain Chipotle where at the time of writing, "More than 40 people have fallen ill with E. coli food poisoning after eating at Chipotle Mexican Grill restaurants in six different states…the outbreak expanded with new Chipotle-linked E. coli cases reported in California, Ohio, New York and Minnesota, the U.S. Centers for Disease Control and Prevention said."

This type of warning is reminiscent of those that are propagated by public health agencies during BBQ season reminding consumers to BBQ their chicken and hamburgers particularly well because of risks of E-Coli outbreaks—a ubiquitous bacteria that can be destroyed by proper cooking but may linger in undercooked or rapidly cooked meet where the necessary bacterial-killing inside temperature is not reached. In 1993 there was a serious outbreak in the Jack in the Box chain of fast-food outlets in the United States that resulted in hundreds of illnesses some of which resulted in chronic and serious illnesses—it had a profound impact on new standards for food preparation in the fast-food industry.

These warnings are different from public health warnings about eating habits—having watched the potential harmful effects of coffee come and go over the years, I was forever grateful that the final estimation of this almost universally consumed drink, is that it probably has more beneficial effects on health parameters than negative ones—for me coffeeophile a public health blessing: yet the European Union recently recommended against drinking more than four cups of coffee a day based on caffeine consumption. In contrast is the recent report that," Hold on tight to that cup of Joe—because it could save your life. New research out of the Harvard School of Public Health says lifelong coffee lovers could be at less risk of dying from type two diabetes, suicide, cardiovascular and neurological diseases. "We found people who drank three to five cups of coffee per day had about a 15 percent lower [risk of premature] mortality compared to people who didn't drink coffee," one of the authors of the study, Walter Willett, told NPR.

So what about the bacon, hot dogs, corned beef and pastrami? What about the BBQ steaks and hamburgers? Does everyone who is not an life-long vegetarian or subscribe to the Mediterranean diet run the risk of sudden death from a BLT or hot dog at their favorite ball game? That a recent study in the US reveals that 57% of American Jews eat pork in one form or another (http://www.pewforum.org/files/2015/11/201.11.03_RLS_II_full_report.pdf)—should not necessarily be interpreted as a sure sign of anti-religious drift or impending doom, but rather the way surrounding cultures and practices influence people of all ethnic and religious backgrounds.

The final message should be: Most things can be eaten in a moderate and balanced fashion, unless there are specific health-related concerns for an individual—more important than how much bacon, meat and pastrami one eats, is that the portions are in keeping with one's individual nutritional needs, that they are balanced with other non-meat foods, including vegetables and fruits and that they are prepared and cooked well Food is one of the most enjoyable aspects of life—we should not make ourselves obsessively concerned every time a new "warning" comes out about the dangers of life and what we eat—hang in there—likely the recommendation will change over time—take it all in stride- with a dollop of mustard.

This article was originally published online at http://www.cjnews.com/perspectives/ideas/wheres-the-beef

Make sure your Substitute Decision-Maker Understand the Rules of Engagement

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I have heard it many times, “ I am the POA (wrong use of the term—what they mean is the Substitute-Decision-Maker (SDM) or as is often used in the United States Proxy: the POA is in fact the document outlining the substance of the decisions that are being referred to). But that being said what the person, often a family member, usually an adult child is implying is that by being appointed the SDM (either through an advance directive (living will) or appointed by the legal system or as is the case in Ontario through the hierarchy of the Health Care Consent Act, they can make the decisions on behalf of their family member—often a parent—often one with a disease affecting decision-making such as dementia.

What many SDMs do not realize or wish to ignore is that their role only comes into being when the person that are ostensibly acting for is deemed to have lost their capacity to make decisions—that is to see is incapable using the legal sense of the term—unable to understand and appreciate the implications of their decision-making for what is usually limited to health care decisions—and as it is in Ontario, application to a long-term care facility.

What this often means is that SDMs sometimes try to control decisions of their family members who have not been deemed to be incapable, but choose not to get into conflicts with the family members that they know will have to depend on them in the future. I have witnessed situations where an older person admitted to a hospital because of a fall or an injury, but who is mending and able to return home perhaps with some help, is directed by a family member to apply against their real wishes to a nursing home. When for example a social worker asks the person if that is what they want and they say, “no” the family member is often incensed that the social worker is interfering with the “rights” of the SDM to make such a decision on behalf of a reluctant or even refusing parent.

Sometimes it is a matter of not understanding the law, or not respecting the person on whose behalf you under other circumstances would be acting. At other times it is an issue of control and the SDM is trying to find a solution ostensibly for the benefit of the person, but at times it is also for the benefit of the SDM in terms of the demands on their time and energy.

Sometimes it revolves around issues of medical treatment where either the patient refuses or wishes a treatment that the SDM wants the opposite—the result is often what appears to be an either bullying or blackmail by the SDM toward to person on whose behalf they are to be acting or at extremes to the physicians who are trying to follow the law and adhere to the capable wishes of their patient.

It is not easy at times to act in the role of SDM especially for someone you love—the way I often frame it is rather than being a “right” to be carried out by the SDM, it is in fact the “right” to fulfill the duty that one who is appointed as SDM to act on the behalf of a dependent or vulnerable person—that duty is one of the privileges of life and should be undertaken with the utmost seriousness and devotion that one can bring to the situation.

Any Reason to not Enjoy Sex if you are in a Nursing Home?

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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.

Why a Section on Ethics?

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At the time of my medical training, the term medical ethics was hardly used when discussing complex issues related to patients and families. For most of us in practice in the 1960's when I attended and completed medical school, the main source and inspiration for medical ethics was Hippocrates, and from that legacy we focused on the concept of ""First do no harm" (Latin: Primum non nocere)"; which in fact Is not per se a quote from the oath, but the essence of the concept contained within it. If you think of it, the implications of that ethical dictum did not really help direct physicians: as medical care became more complex the avoidance of harm unless within a framework of "on balance" with proposed or possible "benefit" might have undermined most of the substantial progress of medical care—contemporary care has substantially changed the nature of care, but often at the cost of potential adverse outcomes in order to achieve remarkable goals.

In the late 1970's in North America, emanating from scholars from Georgetown University in Washington D.C., the first edition of the Principles of Medical Ethics, edited by Beauchamp and Childress came into being. This book and the thesis within it had a profound impact for the future of medical ethics especially in North America where the concepts contained in the book were eventually adopted and integrated into contemporary medical practice. It became gradually integrated into the complexities of clinical and health care policy decision-making. The main impact on the ethical framework for patients, families and physicians was the introduction of the ethical principle of autonomy as a primary powerful principle that in many ways displaced for primacy, beneficence (the duty to do good) as a dominant if not over-riding ethical principle.

With the integration of autonomy as a critical if not dominant ethical principle, the nature of medical decision-making and balance of how complex decisions are made and what the deliberations consist of, has changed remarkably. The ability as supported beyond ethics, but also in legal jurisprudence, now requires all of us in practice to communicate with our patients and/or their legal substitute decision-makers the nature of our clinical decisions. The most important revolutionary change that followed the introduction of the concept of autonomy was the accepted ability and right of patients and/or their substitute decision-makers to refuse, withdraw or request that even potentially life-saving or life-maintaining treatments be withheld. This is in sharp contrast to the culture under which I was educated, where a physician's opinion and recommendation was almost a "holy writ" and medical orders could be made without any discussions whatsoever with patients and families. I can recall as a medical student, working as a junior house officer (intern) making monumental medical decisions, usually with the support of a medical resident (registrar as they were referred to in Scotland where I trained) without actually speaking to the patient or family—it was just the domain of the physician.

The concept of autonomy and the introduction of the balanced ethical considerations of this principle with the three cardinal others; beneficence, non-maleficence and justice now form the contemporary ethical framework in which most of us work. There are other ethical considerations that come into discussions of medical decision-making and medical policy—but for most physicians and other health care providers, the four ethical principles espoused in that first edition of Principles of Medical Ethics appear to dominate contemporary approaches to medical ethics in clinical practice.

With that in mind it was decided by the editors of Health Plexus to introduce a section on medical ethics, with a primary, but not exclusive focus on the elderly, and those with multiple co-morbidities and cognitive impairment. Readers are invited to submit concise case histories reflecting challenges that they have faced in the arena of medical ethics and where possible some discussion of how the clinical situation was handled, its ultimate resolution if there was one and the impact of the clinical scenario and ethical challenges on all the clinical staff and the patient and family involved. These cases do not have to be the monumental ones that often make it into the court system or the media, but rather the everyday cases that we all deal with on an almost daily basis and usually resolve with good will and good communication and sensitivity to the issues involved.

I invite you to read the first contribution to this section Discussions with your Doctor about your Future Wishes on the following page.