“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 expressed 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
Consider the case of Mary Mary was an 88-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 one 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, by explaining that “she could not do anything that would seemingly be responsible of ending the patient's life prematurely.” Dr. Gordon Discusses 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 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 world-wide 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 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 them in the first place.
Michael Gordon is a medical professor, ethicist, and one of Canada's best known geriatricians. His work to advance the understanding of aging and end-of-life care is valued by both public and professional audiences. Dr. Gordon explores and addresses the difficult questions of caring for the elderly with late-stage dementia. He currently lives in Toronto, Canada.