Dr. Gordon is the medical program director of palliative care for the Baycrest Geriatric Health Care System and a professor of medicine at the University of Toronto, and is the author of numerous articles related to ethical issues at the end-of-life.


Pain.com: What are the ethical concerns related to end-of-life care for patients with dementia?

Dr. Gordon: The main concerns include: Who will make decisions on their behalf if they cannot make them, and in which domains (i.e., clinical, personal needs, place of care)? Does the proxy really understand the role and on what basis should decisions be made? What degree of medical intervention is warranted for which conditions and on what are such decisions based?

The issue of autonomy in people with profound dementia has been translated into that of substitute decision-making so that the respect for autonomy is there, but not necessarily as directly from the afflicted person. The issue is always-- what is the degree of the dementia, and what types of decisions might the person continue to be able to make even if not able to fully verbalize them or maybe conceptualize them?

Pain.com: Is there any evidence showing that dying dementia patients suffer unnecessarily and/or receive inadequate palliative care? What ethical implications are associated with this?

Dr. Gordon: I cannot comment on specific evidence from the literature, although I suspect strongly that if one did a proper literature search one would find many such references. I have recently applied for a grant to develop a handbook that addresses this issue. I believe such a handbook is necessary based on my own observations as well as the many anecdotes told to me about the lack of knowledge and/or understanding of the end-of-life needs and palliative care approaches to individuals with a primary diagnosis of dementia in contrast to those individuals with a diagnosis of a malignant disease.

The ethical implications are that we do not always provide beneficent care in terms of meeting the clinical and other needs, and these patients may unnecessarily suffer because of the lack of proper interventions and communications with their loved ones.

Pain.com: What guidelines and frameworks are there for clinicians to implement when caring for dementia patients at the end-of-life?

Dr. Gordon: I do not think that there is a good, coherent set of guidelines to help clinicians deal with these issues. There are publications, however, including some booklets available through the Alzheimer's societies, which do address some of these issues.

Lacking any coherent set of guidelines and depending on the jurisdiction, there may be many physicians reluctant to use certain classes of medications, such as opiates, in dementia patients because these patients are suffering from "non-malignant" pain or other symptoms, and physicians might be afraid of regulatory discipline.

Pain.com: When it comes to working with the family members of a dementia patient at the end-of-life, what are some barriers or ethical concerns that arise between the clinical care staff and the family?

Dr. Gordon: There are many. One is lack of true understanding of the implications of a diagnosis of dementia and the natural short- and long-term outcomes of the disease and the stages and the prognostic factors. Unlike "cancer," individuals and their families often do not think of dementia as having a "terminal phase."

Another issue is the whole range of religious and cultural belief systems that may prevent certain types of steps from being taken, such as considering the withholding of feeding tubes or withholding of medical interventions for intercurrent infections or other conditions that might lead to death.

Pain.com: Is there a good rule of thumb for hospice/palliative staff to follow when involved with an ethical dilemma?

Dr. Gordon: The first goal should be to try and understand the value system from which the person and the family come from and whether they are consistent and congruent, i.e. the mother was religious and the child not, or vice versa. Once the value systems are established, staff must identify what the family believes, in their deepest of hearts, to be the wishes of the loved one. Specifically, what would the patient likely to have wanted under the circumstances and why?

If the family believes that their loved one might have wanted something that they cannot bring themselves to do, it may then become necessary for the staff to help the family explore the issues and conflicts through an in-depth discussion. During this discussion, ethical and clinical values should be explored. If there seems to be an impasse, it is sometimes worthwhile to bring in a third party who might add to the discussions. This third party could be an ethicist, if there is one available, as well as a religious advisor who truly understands the situation.

Pain.com: Any closing comments you'd like to share?

Dr. Gordon: I believe that the biggest challenge in this field is for physicians and nurses to understand and help educate their patients and/or families about the natural outcome of dementia. It is a condition with a gradual decline that includes the loss of many important attributes, including the ability to feed oneself or to respond to interactions and stimulations. The person becomes prone to co-morbidities, including infection and other conditions that are pervasive in the older population. Clinicians must be prepared to provide all the potentially effective clinical treatments to provide symptomatic and palliative care in the end stages. They should not get caught up in searching for things that can be "treated," even for a short time, and neglect to address the true suffering that patients and their families experience from inadequate symptom management combined with robust emotionally supportive care.
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