In their final month of life, many people with advanced dementia — and men in particular — have received medical interventions that researchers deem burdensome, according to a new study in JAMA Network Open.
The study looks at data collected on 27,243 nursing home residents in Ontario, Canada. All participants had advanced dementia and died between June 1, 2010 and March 31, 2015. The researchers looked at administrative data about the residents’ care, including hospitalizations, use of mechanical ventilation, rates of invasive procedures such as intravenous hydration and non-ventilation forms of breathing assistance, and use of physical restraints and antibiotics.
At the end of life, such interventions are considered medically questionable by some clinicians and, in some instances, harmful.
“The type of person we’re talking about here, when we talk about advanced dementia, is someone who has profound memory difficulties, is often nonverbal, cannot recognize family, requires assistance for most, if not all of their activities of daily living, and 10% of the nursing home residents in our study were bed-bound. So these are people really at the most terminal stages of dementia,” says Nathan Stall, a geriatrician at the University of Toronto, and lead author of the study. The researchers note that nursing home residents with advanced dementia have a median survival of 1.3 years.
In this context, the authors suggest, invasive procedures can have negligible effects on length of life while affecting quality of life; it’s also possible such interventions might needlessly prolong the suffering of a dying patient.
They also indicate that giving people antibiotics at the end of life can contribute to the problem of multidrug-resistant bacteria; moreover, patients at this stage might not benefit from this treatment, or want their lives prolonged through antibiotic therapy.
“These interventions are often avoidable, may not improve comfort, and are frequently distressing to residents and their families,” the researchers write. Their study provides a look at how commonly people with advanced dementia receive such interventions.
The authors discovered that in the nursing home residents’ last 30 days of life:
- Nearly one in ten of the people in the sample — 8.9% — visited an emergency department.
- Over 20% were hospitalized, with a quarter of these hospitalizations occurring in the last 3 days of life.
- Over one in ten — 13.6% — died in an acute care facility.
- Men were more likely to experience transitions in care at end of life than women, with 41% higher odds. In this context, transitions in care involve taking a nursing home resident from their nursing home and moving them to a hospital or acute care facility.
- Invasive procedures were common, with 9.8% of patients in the sample receiving critical care for potentially life-threatening conditions and 5.2% receiving intravenous hydration. A small portion, 0.8% received assistance breathing through mechanical ventilation.
- Men had 33% higher odds of receiving critical care for life-threatening conditions than women.
- Over a third (36.1%) were physically restrained in their nursing homes. Men had 17% higher odds of being physically restrained than women.
- Over a third (36.2%) received at least one antibiotic in the last 30 days of life. Men had 33% higher odds of receiving an antibiotic than women.
- Just 12.3% of women and 11.8% of men received palliative care in the year before their death. Palliative care is a medical sub-specialty focused on alleviating suffering rather than preventing death. Those who did receive palliative care had 26% lower odds of receiving an antibiotic in the last month of life.
The findings are limited in that the researchers were not able to compare the interventions received at end-of-life with the wishes of the recipients or their health care proxies.
“What we do know quite well is that when other researchers… when they’ve actually gone and surveyed substitute decision makers or health care proxies for people with advanced dementia, whether it’s family members or friends that they’ve designated as a decision maker, over 90% say they consider comfort to be the primary goal of care,” Stall explains. “And it’s a similarly large majority of physicians who look after people with advanced dementia who would say that comfort ought to be the primary goal of care.”
Moreover, the authors note that medical interventions, like being brought to an emergency department, can be upsetting to people with advanced dementia.
“For somebody who is cognitively intact, it’s already a distressing environment,” Stall notes. “And then once we’re bringing them into the emergency room or hospital, we’re doing things to them which are often not comfortable, inserting intravenous lines into them, doing blood work on them, subjecting them to imaging, changing their rooms, frequently rotating hospital staff.”
The authors suggest that the differences in care seen between men and women might have to do with social and cultural factors. They explain that women are more likely to partake in advance care planning and conversations about end-of-life wishes with family and friends. They add that women, compared with men, have less fear of death and more commonly refuse extreme life-saving measures such as intubation and cardiopulmonary resuscitation (CPR).
The authors also note that in heterosexual couples, wives are more likely to act as caregivers for a spouse with dementia than husbands are. Because it’s more common that men have women advocating for their care than vice versa, it’s possible that men are more likely to receive care simply because they have someone advocating for them at all. “We know men are more likely to have a caregiver, and men are more likely to probably have someone advocating for them at the end of life than women are,” Stall explains.
The authors also note the stress and strain of end-of-life caregiving on spouses and how that might complicate decision-making in ways that lead to patients receiving more intensive care.
Moreover, the authors cite research that finds men with dementia are more likely to receive health care than women are. They add that physicians’ gender bias in which men tend to receive more aggressive treatment might further contribute to why women are less likely than men to be offered invasive care — a holdover that might have been favorable for men’s care when they were younger, but that is disadvantageous in their final days.
“What is valued [by patients] earlier in life, and some of the gender differences related to that, can actually be problematic at the end of life,” says Paula Rochon, a senior scientist at the Women’s College Research Institute, and one of the paper’s authors. “I think that speaks to one of the reasons why it’s important to talk about these things…. What is the kind of care you’d like to receive at end of life? And to think about that in advance, so that it’s something that you’re able to plan for.”
Story ideas for journalists
In addition to raising awareness about the importance of end-of-life planning, Rochon and Stall suggest the following angles for journalists to pursue:
- Broadening understanding of what constitutes a “life-sustaining measure” at end-of life. Stall explains: “When we talk about advanced care planning and health care, often all anyone talks about is, ‘Do you want CPR? Do you want to be intubated? Do you want shocks to the heart, the defibrillator?’ Those are sort of the three things people talk about, but really in the setting of a condition like this, that should be broadened. It should be, ‘Do you want to be admitted to the hospital? Do you want to receive antibiotics? Do you want intravenous lines to be placed into you? Would you want a feeding tube to be inserted? Those are the sorts of broader questions that we need to be asking these individuals.”
- The scarce supply of geriatricians in Canada, the U.S. and other countries, and the role that geriatric medicine could play in improving end of life care.
- Clarifying the understanding of dementia as a terminal disease. “Many nursing home residents that are dying with dementia are still not perceived as having a terminal condition,” Stall says. “And only a small minority of our nearly 30,000 nursing home residents actually saw a palliative care physician. And I think it’s important, because previous research has shown in the setting of advanced dementia, when you actually educate the healthcare proxy, or the substitute decision maker, for a person with advanced dementia about the terminal nature of advanced dementia and the expected complications, that person is much less likely to receive burdensome interventions.”
- Gender differences in incidence of dementia — women are more likely than men to have dementia — and implications for tailoring interventions to increase advance care planning.
- Stall notes that worldwide, less than one in four people with dementia actually receives a diagnosis in the early stages. He suggests bringing this phenomenon to light along with its implications as a missed opportunity for early intervention and advance care planning.