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"I want to provide the best care possible. The suffering has gone on for a long time, and I want to be sure the end stage is as comfortable as possible."
This common sentiment is ex-pressed by both health care professionals responsible for caring for frail elders experiencing the later stages of dementia and family members trying to ensure the most compassionate care for their loved ones. Health care providers and family members often struggle with painful decisions when ...
"I want to provide the best care possible. The suffering has gone on for a long time, and I want to be sure the end stage is as comfortable as possible."
This common sentiment is ex-pressed by both health care professionals responsible for caring for frail elders experiencing the later stages of dementia and family members trying to ensure the most compassionate care for their loved ones. Health care providers and family members often struggle with painful decisions when confronting the inevitable while providing love, compassion, and care. Modern medicine may offer seemingly promising treatments, but eventually, the impact of Alzheimer's disease and other causes of dementia can cause profound deterioration in the patient's quality of life. The focus must eventually shift to compassionate end-of-life care. This guidebook reflects Dr. Gordon's extensive experience with health care professionals and families struggling with these poignant and difficult decisions.
"... families will learn much about helping patients with dementia, but so too will physicians and other caregivers. Michael Gordon's humanity shines through every page, and, when combined with his medical expertise, the result is a guide which is both truly thoughtful and practically useful."
-Professor Arthur Schafer, Director, Centre for Professional and Applied Ethics, University of Manitoba
"Dr. Gordon is truly a healer whose experience as a geriatrician provides a road map for all of us who want to provide care, respect, and love for people diagnosed with dementia."
-Steven R. Sabat, PhD, Professor, Department of Psychology, Georgetown University
Why this guide?
Many highly industrialized countries face a rapidly aging population. According to Statistics Canada, one in eight Canadians in 2001 was aged 65 years or over, and by 2026, one Canadian in five will have reached age 65. It is imperative then that age-related illness and end-of-life care are more closely and openly discussed and understood among health care professionals and in the public forum.
In recent years, there has been an increased knowledge and awareness of Alzheimer's disease and other causes of dementia by health care professionals and the general public. This is in part thanks to the efforts of organizations, such as the Alzheimer Society of Canada and the Alzheimer Association in the United States, that are committed to addressing the challenges associated with the care of those living with dementia. This is also due to the development and marketing of medications that can ameliorate symptoms and affect the course of diseases that cause dementia. Even if these initiatives have been motivated partially by the pharmaceutical industry's financial interests, ultimately it has meant that it is now part of the normal discourse to identify individuals with cognitive impairment and to focus on interventions that might be of value.
At first it may sound a bit counterintuitive to frame the more recent spotlight on end-of-life issues in a positive light. However, an aging population and the accompanying abundance of age-related issues translates into the reality that many more people are living longer than ever before. There was a time when there wasn't a significant need for discussions regarding end-of-life issues or for guidelines for caregivers and health care professionals. This is because, in the past, individuals would have a much steeper end-of-life trajectory after falling ill in old age. Now, thanks to significant medical advances, there is an average length of four and a half years spent by patients in a long-term care home before they die. Many older people die at home after long and disabling illnesses. In order to remain at home during this last period of life, there is often the need for help from family members, friends, neighbors, and home care services. Accordingly, this means that there are new end-of-life challenges and procedures that must be discussed, debated, and hopefully resolved. This is the starting point of this guide.
Dementia: A Brief Overview
Dementia is a general term that is used to describe a condition that affects primarily older individuals whose memory, judgment, and other cognitive functions decline; frequently this is accompanied by abnormal behavior, such as agitation and suspiciousness. Dementia has many causes and thus many variations in both the way symptoms occur and in the impact on cognitive function and emotional state.
Alzheimer's disease is the leading form of dementia. It currently represents 63 percent of all dementias. What is known as vascular, or multi-infarct, dementia accounts for about 20 percent of all cases. Both forms are caused by the death of cells, which, in the case of the vascular component of the disease, is due to blockages of the many small blood vessels in the brain. This results in the brain cells being deprived of oxygen and essential nutrients. Both types of dementia can occur in isolation or in combination—a common occurrence, particularly for those who are getting on in their years.
Much of the effort during the past few years has been on understanding the mechanisms of disease that cause the different kinds of dementia and on what might be done to decrease the risk and possibly treat the various symptoms. We have come to recognize that although there are likely different categories of dementia, there is a good deal of overlap between the various types of dementia that affect most individuals.
There is an overlap both in terms of the risk factors and the usual steps suggested in order to mitigate these risk factors. Many of these steps are lifestyle related and include: the cessation of smoking, regular exercise, and proper diet, plus the control of hypertension (high blood pressure), hyperlipidemia (elevated or abnormal blood fats), and diabetes mellitus.
For other less common causes of dementia, there are some interventions that may be useful in specific cases, but for the vast majority of those who experience a dementia-causing illness, the approach noted above is fairly consistent. In addition, many researchers and scientists argue that there are other steps that individuals can take to decrease the risk of the disease or perhaps slow the progression of it. These may include challenging brain function through brain exercises such as crossword puzzles and brain teasers, as well as avoiding head injury, for example from sports accidents. Whether the use of psychoactive substances such as recreational drugs may play a role is not clear, but most physicians would cautiously suggest that individuals avoid the use of substances for this and other health care-related reasons. For example, alcohol abuse has long been known to cause injury to the brain, and prolonged use can result in dementia. In those with the propensity to other types of dementia, alcohol can be an additive factor in its causation.
Physicians typically use a control or curative model when dealing with many illnesses, and this tends to be the same when approaching patients with dementia. Even though there is no cure for dementia at any stage, the general medical approach is to use those available, proven medications to ease the symptoms as the disease progresses. The goal is to diagnose and treat the dementia as early and effectively as possible and to maintain as much function as possible for as long as possible.
During the past decade, a number of medications have been introduced that purportedly improve some aspects of function in those living with dementia, as well as perhaps decrease the rate of clinical decline. Although there has been some controversy as to the efficacy of these medications in North America, they are widely used, both alone and in combination. Additionally, it is sometimes necessary to use behaviour-modifying medications when dementia-related behaviours do not respond to behavioural modifications, environmental interventions, and various other non-pharmacological interventions. These include antidepressants and various minor and major tranquilizers, often in the class called neuroleptics, including a newer variety called the atypical neuroleptics.
Consider the Case of Mary
(This is a fictionalized synthesis of a number of real cases that share common themes with the emphasis on one case in which the sex, name, and other details of the case have been altered to respect the privacy of the individuals involved in the story.)
Mary was an eighty-eight-year-old woman admitted to complex continuing care from an adjacent long-term care facility for a pulmonary tract (lung) infection. She lived with dementia and had gradually declined in function during the preceding four years, having lived for three years in the retirement home. The aspiration pneumonia was not the first episode of pneumonia she had during the preceding year, and her attending physician was aware of her declining function and general disability. She had difficulty recognizing people and was even at times prone to mixing up close members of her family. In terms of basic activities of daily living (ADLs), Mary needed help in all aspects of care. For example, she often kept food in her mouth for long periods of time before either swallowing or spitting it out, and was by this time doubly incontinent; that is, she could not control her bowel movements or her urination.
The family, distraught by her decline, continued to search for treatments that might improve her cognition and decrease her risk of infection. The focus was essentially on keeping their mother alive. Though never actually having had this particular conversation with her, they had rejected in principle any thought of artificial nutrition and hydration, as they believed that is not what she would have wanted. End-of-life preferences in general were never discussed when she might have been able to engage in such matters; her family felt that this kind of conversation would have been too painfully upsetting for their mother.
After a recovery from the aspiration pneumonia, Mary experienced another similar episode, and the attending physician asked the family what they would like to do. Searching for guidance, they asked the physician for options, and she outlined various interventions, including some imaging studies and blood work that might help "diagnose" the problem. The physician, however, did not bring up the option of end-of-life care, in keeping with a palliative approach to current and future care. A short time later, the patient passed away after another course of antibiotics and some limited symptomatic treatment to address difficulty breathing and severe shortness of breath with associated agitation. The physician explained that she was reluctant to use morphine, other than in very small doses, for example, to decrease the respiratory symptoms. She explained that she "could not do anything that would seemingly be responsible for ending the patient's life prematurely."
Dr. Gordon Discusses
Note to readers: In this book when the issue is part of the "Dr. Gordon Discusses" section, the text will be italicized to highlight this more personalized portion of the book and to separate it from the other sections.
It is clear from the fictionalized anecdote that Mary's physician did all that she could do to respond to the wishes of Mary's family and prolong their mother's life. In fact, this is exactly the issue that needs to be examined: in essence, Mary's quantity of life was favoured over her quality of life. While this is certainly understandable from a cultural, religious, or even a simply emotional perspective (families often have an instinctive desire to keep their loved ones alive for as long as possible), there are many detrimental effects of taking solely this curative, interventional approach to end-stage dementia.
Dementia: Denial and Disbelief
First of all, the effectiveness of using an aggressive medical approach in dealing with end-stage dementia must be questioned when patients often must endure high levels of discomfort for a relatively low return.
There are objective ways of defining what is meant by end-stage dementia. One of the evaluation scales is called the Global Deterioration Scale and is used by clinicians and researchers worldwide to measure the level of function of those living with dementia. It is also a good indicator of the expected trajectory for future life. The clinical picture as the end of life is approaching usually consists of a vocabulary that has become very limited, and then verbal abilities eventually disappear. There is usually a loss of ability to walk independently and sit without support. There is also the need for help with eating and using the toilet. Most people in this stage of progression are usually incontinent.
By the end stages of dementia, the process of decline can be generally predicted, and even though an exact prognosis may not be defined, the general time period is rarely as long as six months and is more likely anywhere from one to six months. Evidence has shown that end-stage dementia is associated with a poor prognosis, and invasive treatments do not significantly improve the duration of life. Thus the downside of these medical advances may result in the unrealistic priority to sustain or lengthen life. This may paradoxically lead to further suffering due to ineffectual medical procedures and treatments.
Additionally, there now is such a great focus on medical treatments that conversations and decision-making about the dying process may seem to be even harder to initiate than ever before. In previous generations, death was put not in a medical or hospital context, but in a social, cultural, or religious context, and this helped to give the dying process meaning for the terminally ill person and his or her family. Equally challenging are religious perspectives that support all measures that promote life, even under very trying and challenging circumstances. Physicians and other health care professionals must be aware of the impact of such belief systems on the decision-making that goes into end-of-life care. Sometimes religious consultants might be of assistance to families who need to both find ways to accept the reality of the end-of-life situation and also make decisions on behalf of their loved one.
There has been a kind of "medicalization" of death in contemporary society, creating almost a universal conspiracy of silence surrounding the process of death and dying. There is often a lack of communication when it comes to discussions about the natural course of diseases causing dementia and the terminal stage of the disorder. This is the time (ideally early on in the disease trajectory) where important planning and decisions about end-of-life care should be part of the dialogue between patients, their families, and physicians responsible for care. The result of this silence is often a series of aggressive medical interventions and then shock and/or denial when the terminal stages of dementia do occur. There is typically little preparation or communication about how to approach the care needs at this point.
For most people and their families who are confronted with a diagnosis of dementia, the initial response is often a combination of denial and disbelief, as well as a quest for potentially reversible causes or aggravating factors. Some patients and families go from one physician to another trying to determine whether or not the diagnosis is "certain." Often the patient gains little insight or understanding of the condition. This can lead to many problems, as the person is not aware of the deficiencies in cognition and function and may be very upset as steps are taken, for example, to assure their safety as well as the safety of others. This point is often dramatically brought home to families when it becomes necessary to report the diagnosis of dementia to the motor vehicle bureau, usually resulting in a loss of one's driver's license. This may cause a terrible loss of both self-esteem and sense of independence in the person living with dementia. The decision often causes strife in the family, as the patient may not understand why the step has been taken and may accuse the family of being responsible for it, especially when the medical appointment was arranged by the family in the first place.
One of the problems that family members face is the sense that the process has no end. There usually is a very slow, progressive decline in function, with the family members undertaking all kinds of steps to increase care and attention so that life can go on. For much of this process, the person suffering from dementia can participate in many activities of life and find enjoyment in some aspects of life and relationships. This might normally be the time to discuss the long-term prognosis and expected outcome. As this period of the disease may last some years, discussion about treatment and care preferences for later on may not occur. These discussions best take place while the person affected by the disease still has the cognitive abilities to tell others of their wishes.
A common question often raised by family members is, "When is the right time or best time to discuss end-of-life decisions or preferences?" In some ways, the optimal time is when there is nothing wrong with the person so that the discussion is dispassionate and almost theoretical, as if one were talking about a third person, even though it is meant to be personalized. It might be asked as, "What would you prefer to have done should you be in the following state of function?" Sometimes it is hard for a person to imagine such a state, but many times there has been a situation with another family member or friend. If this situation can be referred to as an example, it might become clear to the person that what was done to that other person represents a state or decision that they would either accept or reject.
Excerpted from Late-Stage Dementia by Michael Gordon Natalie Baker Copyright © 2011 by Michael Gordon, MD, with Natalie Baker. Excerpted by permission of iUniverse, Inc.. All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
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