The Goals of Medical Care

"[Patients -- outside of this study -- have said that having permanent disabilities that made it impossible to get out of bed, communicate, or reason, would be] worse than death. And yet these outcomes are rarely explicitly discussed."

"[Pursuing] longevity-focused care when a person is living in a state they consider worse than death is contrary to resident-centred principles for which long-term care homes strive."

Bruyere Health Research Institute and Institute for Clinical and Evaluative Studies research (ICES)

 

"We are not offering resident-centred care or evidence-based care if we don't talk about the possibility of severe disability and ask about the circumstances when life prolonging treatments should not be acceptable." 

"[In interviews some long-term care residents have expressed that loss of independence is] more distressing to them than the thought of dying."

Lead research author Ramtin Hakimjavadi, internal medicine resident, University of Ottawa 

Bruyere Health

 

The study published in the journal JAMA Network Open, outlines a situation that is anything but salubrious for the elderly placed into long-term care, for whatever reason. It found that one of five people, within five years of admission to long-term care, become permanently disabled. Residents in some instances become incapable of making personal decisions for things as fundamentally simple as what to eat or what to wear. And they become unable to communicate with those most familiar to them; their own family members.

 

The study's purpose was meant to cast light on severe cognitive and physical impairment that affects some individuals who have been admitted to long-term care homes. Open discussions relating to the "natural course of frailty trajectories" in long-term care inclusive of permanent impairment, could assist in supporting medical decisions focusing on the wishes of residents. 

 

A total of 120,238 adults aged 65 and up who had been newly admitted to long-term care facilities in Ontario between the years 2013 and 2018 were followed by the research team which set out to trace residents' experiences admitted to long-term care, as well as those who had already lived a year or longer in a state of severe disability. Twenty percent of residents admitted to long-term care were found to have become permanently unable to make everyday decisions in five years following admission. 

Of those studied, 13 percent became completely dependent on all care at every level which included eating, bathing and toileting. Half of those studied lived with that steep level of disability for over 45 days. Some seven percent surrendered to an inability to communicate and interact with others, including those most familiar to them, while 32 percent became fully incontinent. The researchers contended that the potential outcomes affecting a significant number of long-term care residents should be anticipated and acknowledged when families speak of end of life wishes with their loved ones.

 

Dr. Kowbewka, the study's senior author, admitted to surprise learning how long some long-term care residents endured with severe disabilities. He pointed out that family members who have had open discussions prior to the time when severe disabilities became evident were better equipped to make decisions. It was revealed that 65 percent of residents in the study chose a do-not-resuscitate order, while a quarter had do-not-hospitalize orders. The result was that those with advanced care directives lived a shorter time with a severe disability.

 

The takeaway from that was the likelihood that the residents' preferences had been discussed prior to their descending into severe disability mode, and their care partners or providers were as a result prepared on how best to support their end-of-life decisions. There are two other issues here that don't appear to have been discerned, mentioned or taken account of; that people placed in such institutions tend to physically and mentally deteriorate since the very nature of their placement is to remove their self-agency.

 

The other is that, unspoken, but certainly to be inferred, is that in agreeing not to impose strenuous life-saving measures in situations of extreme collapse, the end result is akin to hands-off assists in ushering in premature death on the basis of potential harm arising from medical intervention, in favour of allowing the natural process of aging and accompanying deterioration leading to a more imminent death.  Which brings to mind Canada's MAID program: Medical Assistance in Dying.

Ontario Palliative Care Network

"The goals of medical care are generally to help people live longer, to feel better and to function better.} But in serious illness there does come a time when those goals are in conflict with each other and so having that conversation about when is pursuing longevity adding to discomfort, or when is pursuing comfort more aggressively going to shorten life [helps with decision making]."

"I think we are trying to make that concrete [when to discuss values and wishes in end of life care] with these really clear outcomes [such as] being in a state where you cannot understand others and cannot make yourself understood and being permanently like that."

"Everyone understands that and  you can talk about what you would want if you were like that even though it is scary and hard to hear."

Daniel Kobewka, Bruyere investigator, adjunct scientist at ICES