An internist/geriatrician and head of Geriatric Medicine Dalhousie University in Halifax, Nova Scotia, Dr. Mallery’s role as the informed family member-caregiver is both impeded and enhanced by her medical training. In caring for her 83-year-old father who suffered from a complex interaction of health conditions (i.e. cerebellar strokes, CHF, atrial fibrillation, hemolytic anemia) that contributed to and exacerbated his declining mobility and cognitive impairment, Dr. Mallery undergoes a learning process that informs the reader about pertinent medical and social issues affecting end-of-life care.
The following are salient issues discussed in her narrative:
- Role of the physician family member – The fear of her father dying alone in a hospital, as observed in her medical practice, compels Dr. Mallery to ensure that her father would be as comforted as possible toward end-of-life, even if it means becoming the unintended “interfering family member.” Dr. Mallery addresses medical concerns she feels are glossed over by her father’s health care providers, even correcting an internist in his medical evaluation methods. At times it seems difficult for her to draw a distinction between her role as a physician outside of her father’s care and the family member who is overseeing her father’s care. At one point, she muses, “There was my beloved father lying in bed and in my hands were the drugs that could provide comfort, but also indicated that his life was effectively over.”
- Family needs clashing with those of the provider – Throughout the narrative, several instances of family needs clashing with those of the provider appear, demonstrating the fundamental differences that exist between providers and the family when it comes to the patient’s care needs. In Dr. Mallery’s case, given her medical background, there is an added underlying power struggle. For instance, after observing her father’s decline in mobility, Dr. Mallery suggests he get a walker, to the dismay of his internist who opposes the suggestion on the grounds that a walker would diminish his ability to function independently. Perhaps the more compelling example is the intubation of her father against the family’s wishes and the DNR preference established in her father’s advanced directive.
- Lack of geriatric-focused care for the dying frail elderly – When her father is hospitalized after a fall that results in bleeding in his brain, the physicians are hopeful that he will recover, though Dr. Mallery believes her father, as an elderly individual, would have a poor prognosis compared to younger patients. In addition, she points out that frailty is not commonly recognized as an indicator of functional decline and strongly advocates for its wider recognition by physicians caring for the elderly.
- Physicians fail to discuss prognosis when appropriate – A recurring theme throughout the narrative is the lack of evidence-based decision making by the providers when prognosticating the patient. Furthermore, prognosis is not readily discussed, especially in the case of frail elderly patients experiencing functional decline and cognitive impairment. Dr. Mallery states, “Over the course of more than a year of illness, there was never a single discussion about prognosis, death, or quality of life – for my father or the family who was caring for him.” In addition, palliative care for the patient is initially dismissed by the provider when the family requests it. Dr. Mallery suggests, “We need much more attention paid to how we die, using innovative approaches to care for the dying while also assisting families.”
- Expensive, unnecessary, and sometimes aggressive medical treatment – When her father is transferred to a subacute rehabilitation unit following his hospitalization, Dr. Mallery is stunned by the myriad interventions that are ordered – physiotherapy, occupational therapy, speech therapy, swallowing evaluation – all of which she views as impractical costs to the system, the family, and the patient, in terms of causing him discomfort and exacerbating his delirium.
- Taking a holistic approach to assessing the patient’s health, including health status, mobility, function, cognitive and support systems.
- Ensuring accuracy of information regarding patient’s health history, especially for individuals with cognitive impairment (obtaining corroborative accounts from family members is strongly suggested).
- Avoiding redundancies in gathering information on the patient, which would require collaborative efforts among members of the health care team.
- Developing an appropriate treatment plan for the patient in alignment with hard evidence that could inform the decision making process for both the clinicians and the family.
- For providers, recognizing signs of end-of-life, especially frailty as an indicator of poor health in the elderly.
In the case of a frail elderly patient with functional decline and cognitive impairment who cannot competently make decisions for himself/herself, it is always difficult to know what he/she truly wants or needs at any given time. In any case, the important take away message lies in the care principles that Dr. Mallery developed in response to her experiences.
By: Julie N. Thai [GeriPal International Correspondent]