Decision-making tool fails to ease anxiety for families of life-support patients

by Duke University Medical Center

Study participants used a web-based tool to guide treatment decisions they made on behalf of loved ones who had been on life support for at least 10 days. Credit: Duke University

Every year, the families of more than 400,000 patients on prolonged life support in intensive care units across the U.S. face weighty decisions about their loved one's recovery and whether to end life-sustaining care.

04 feb 2019--The patients can't speak for themselves and often haven't made their end-of-life wishes known, leaving these heavy choices to families.

Using a computer-based guide to personalize these decisions can help families feel less conflicted, according to research led by Duke and published in the Annals of Internal Medicine.

However, the treatment guide—a tool commonly called a "decision aid" in health care—did not ease symptoms of depression, anxiety or post-traumatic stress for the decision-makers as they oversaw their loved one's care, researchers found. The randomized clinical trial included 416 decision-makers for 277 patients who had been on life support at least 10 days.

"In some outpatient situations, decision aids can help people make better-quality decisions," said Christopher E. Cox, M.D., the study's lead author and an ICU doctor at Duke. "Therefore, there has been a hope that decision aids could revolutionize complex and expensive hospital-based health care by improving communication with clinicians, shortening the length of the hospital stay and reducing symptoms of distress that are common among those who have to make serious decisions on behalf of a loved one."

These benefits have been observed for non-critical patients who have used decision aids to decide whether to have surgery or how best to screen for certain conditions, Cox said. But little research has been done in a critical care setting, he said.

In the ICU, surrogate decision-makers must consider the patient's values, spiritual beliefs, and often life-and-death scenarios, such as whether the patient would prefer to focus on comfort as opposed to continuing aggressive treatment, with the high likelihood of diminished cognitive ability or independence.

Going through the roughly 30-minute guided computer program did not appear to change whether the decision-maker advocated for aggressive medical care or appeared to favor comfort, or palliative, care, the researchers found.

There was also no difference in outcomes between patients whose caregivers used the guide and those in a control group who didn't use it; hospitalization length and death rates were similar between both groups.

Researchers were surprised to see a division between the guide's recommendations and the family's choices. Family caregivers answered questions about the patient's values, then the guide made treatment recommendations based on that information. Yet more than half of the family caregivers disregarded the guide's recommendations in favor of more aggressive treatment.

The research suggests families with loved ones on life support might need more or different resources to weigh the risks, benefits and costs associated with the patient's care, and how to best represent the wishes of patients unable to speak for themselves.

"We're going to have to rethink this approach for acute care, which is where a majority of health care expenditures occur," said Cox, who collaborated with faculty from the University of Pittsburgh, the University of Washington, the University of Colorado, and the University of North Carolina at Chapel Hill.

"The hospital is one of the hardest places to make these decisions, so perhaps we need an approach that adds more emotional support or a structured role for clinicians to play while family members complete the decision aid," Cox said.

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More information: Annals of Internal Medicine (2019). DOI: 10.7326/M18-2335

Provided by Duke University Medical Center

Assessments could reduce end-of-life hospital stays for seniors

by University of Waterloo

Credit: CC0 Public Domain

Better use of standard assessment tools could help long-term care homes identify which new residents are at risk of hospitalization or death in the first 90 days of admission.

A study from the University of Waterloo and Schlegel-UW Research Institute for Aging has found that newly admitted residents' history of heart failure, as well as their score on the interRAI Changes to Health, End-Stage disease, Signs and Symptoms (CHESS) scale, can accurately determine which residents are most at risk.

24 jan 2019--"Being able to identify at-risk residents early can help long-term care homes ensure they have the necessary care and management strategies in place," said George Heckman, associate professor in the School of Public Health and Health Systems at Waterloo and Schlegel Research Chair in Geriatric Medicine. "These assessments can also help health providers determine which conditions require a trip to the hospital or which would be better managed as a hospice-type condition within the homes themselves."

He added, "It is not always advisable to take someone who is closing in on the end of life out of their home and put them into a hospital setting. These residents are very complex and frail, and not only might they not benefit from the hospital visit, the transition itself can lead to harms such as delirium and further disability."

The study examined data collected from 143,067 residents aged 65 years or older, admitted to long-term care homes in Ontario, Alberta and British Columbia, between 2010 and 2016.

It found that over 15 percent of residents had a history of heart failure. Residents with heart failure were more likely to be hospitalized than those without (18.9 percent versus 11.7 percent). Residents with a history of heart failure were also twice as likely to have higher mortality rates than those without, 14.4 per cent versus 7.6 per cent. At the one-year mark, residents with a history of heart failure had a mortality rate of more than 10 per cent higher, at 28.3 percent compared to 17.3 percent.

The CHESS scale identifies frailty and health instability, and is embedded within the MDS, an interRAI instrument mandated in almost all long-term care homes across Canada. Higher health instability, identified through higher CHESS scores, were associated with a greater risk of hospitalization and death at three months. Most notably, residents with high CHESS scores were more likely to die even when sent to hospital, regardless of whether they had heart failure or not. Mortality rates for the highest CHESS scores were 80 percent; most of these residents died in hospital.

"Together, these two factors independently identified this increased risk," Heckman said. "By making clinical assessments early, advance care planning discussions can take place. Furthermore, by ensuring that the entire long-term care home care team, including personal support workers, understand these risks, they can help monitor resident health and optimize their quality of life in the long-term care home."

The study, Predicting Future Health Transitions Among Newly Admitted Nursing Home Residents with Heart Failure, appears in the Journal of the American Medical Directors Association.

More information: George A. Heckman et al, Predicting Future Health Transitions Among Newly Admitted Nursing Home Residents With Heart Failure, Journal of the American Medical Directors Association (2018). DOI: 10.1016/j.jamda.2018.10.031

Provided by University of Waterloo

One in four seniors doesn't discuss end-of-life care

02 nov 2016—More than one-quarter of American seniors have never discussed end-of-life care, a new study finds.
"Despite decades of work to improve advance care planning, over a quarter of older adults have still not engaged in any type of discussion or planning for their end-of-life preferences or plans," said lead author Krista Harrison, a geriatrics research fellow at the University of California, San Francisco.
The researchers looked at more than 2,100 Medicare beneficiaries aged 65 and older. Data from the group included self-reported age, gender, race/ethnicity, education, income, self-rated health, number of chronic conditions, disability in activities of daily living, and dementia.
The researchers found that 60 percent of the beneficiaries said they'd had discussions on end-of-life care, 50 percent on power of attorney, and 52 percent on other advanced directives.
Thirty-eight percent reported discussions on all three elements of advanced care planning, while 27 percent said they hadn't discussed any of the elements.
The rate of discussions on each element varied by as much as 35 percent, depending on patient characteristics. For two or more elements, the rate was lower among those aged 65 to 74, blacks and Hispanics, and those with less education and lower income.
The lowest rate of end-of-life planning was among older Spanish-speaking Hispanics, with 19 percent reporting end-of-life discussion, 20 percent discussing power of attorney and 17 percent discussing advanced directives.
The study also found that older adults with dementia had much lower rates of end-of-life discussions (54 percent) and advance directives (46 percent) than those without dementia (62 percent and 54 percent, respectively).
"Our findings suggest that there are substantial portions of the population of community-dwelling older adults who need to begin discussions about their plans and preferences before they are unable to share those preferences with their loved ones," Harrison said in a university news release.
The study was published Oct. 31 in the journal JAMA Internal Medicine.

More information: The U.S. National Institute on Aging has more about advanced care planning.

End of life plans added to healthy ageing study

Massey researchers have been surveying older people about their health and wellbeing for 10 years.

It is 10 years since Massey University researchers launched the first comprehensive survey to find out how well New Zealanders are ageing – now they want the next generation of people aged 55 and over to sign up.

01 aug 2016--The latest Health, Work and Retirement longitudinal survey, run by the Health in Ageing Research Team (HART) at Massey's School of Psychology, is the seventh since the project began 10 years ago. This year's 24-page multi-choice questionnaire has been updated to include new questions about dental health and end-of-life planning.
Researchers are hoping to recruit 4000 more people aged between 55 and 70 to take part in the study who were previously too young or have not been surveyed.
The survey was recently posted out to nearly 8000 households around the country from a selected pool across diverse geographic and socio-economic backgrounds, using the electoral role. Researchers are hoping for a strong uptake and are urging survey recipients to complete and return it as soon as possible.
Responses to survey questions provide valuable information about social connections, health, housing, work and other issues of growing older, researcher Dr Joanne Allen says. Reports – based on data from the surveys – are designed to provide information and insights to help shape and inform government policy and assist social agencies on issues affecting New Zealand's rapidly increasing ageing population.
The inclusion of end-of-life planning questions reflects changes in attitude towards the need for more open conversations on the topic.

Deeper understanding of what it's like to get older

The survey covers a wide range of themes including lifestyle and daily habits to how people perceive their lives and circumstances – from family and neighbourhood relationships to safety, medication and alcohol consumption, transport and even purpose in life and reasons for living.
"It gives us a view beyond the basic statistics – we can get an in-depth understanding of the experiences of getting older," Dr Allen says.
Results from three earlier (2010, 2012 and 2014) segments of the study have provided evidence for reports and policy recommendations on specific issues, such as being a caregiver, access to and use of the internet, the needs and concerns of older workers, housing, and survival and well-being after the Christchurch earthquakes.
HART co-leader Professor Christine Stephens says researchers are "very grateful to our participants who have been taking part in the surveys across ten years.
"They have contributed a rich source of information about the changing needs of older New Zealanders and we look forward to being in contact again. We are now seeking new participants around the ages of 55 to 56 to contribute the voices of the coming cohort of ageing New Zealanders to government and health policy."

Information on ageing valuable as NZ's 65+ population grows

The need for research is highlighted by growth of New Zealand's older population, she says, with the number of people aged 65 and over doubling between 1981 and 2013 – from 309,795 to 607,032 people – according to 2013 Census results released by Statistics New Zealand a year ago. This age group increased from 9.9 per cent to 14.3 per cent of the population in that period, and is projected to grow to 23.8 per cent in 30 years.
The Health and Aging Research Team's datasets comprise the Health, Work, and Retirement (HWR), New Zealand Longitudinal Study of Ageing (NZLSA) and Independence Contribution Connection (ICC) surveys. Their work is funded by the Ministry of Business, Innovation and Employment.
Some of the key findings from the HART surveys since 2006:

• Lower living standards equate with poorer health.
• Living standards affect all aspects of health and wellbeing, including a link between poverty and loneliness.
• Older people with vision impairments experience poorer economic, physical, and mental health status, lack of social support, and greater social isolation.
• Mobility is a key factor for the quality of life among older visually impaired people.
• Volunteering is related to increased happiness. People with lower living standards who volunteer have levels of happiness almost as high as people with high living standards. But it is more difficult for older people with low living standards to do volunteering.
• Types of social networks are related to the types of social support that they receive, and is related in turn to both physical and mental health.
• The internet is important for nurturing social networks that contribute to health and wellbeing in older age. The internet is used by over 80 per cent of older people and most often used for social reasons, though not to make new friends – largely to support existing social networks.
• Housing, and the differences in health between renters and homeowners: renters reported lower quality of life and higher levels of depression. Gaps widened over time: over four years the home owners' mental health improved, while the renters' poorer mental health remained the same.
• Home owners who reported loneliness did not experience changes in health. But loneliness for renters was associated with worsening mental and physical health over four years.
• Older caregivers cope better and report better health, greater life satisfaction and less loneliness when they are financially better off. Only a quarter of working caregivers are aware of their rights to caregiving leave, while one third use sick leave, unpaid leave and annual leave to care for others.

More information: Check the HART website for more information: www.massey.ac.nz/massey/learning/departments/school-of-psychology/research/hart/hart_home.cfm


Provided by Massey University

Physicians should help families with decisions about end-of-life care

About 20 percent of Americans spend time in an intensive care unit around the time of their death, and most deaths follow a decision to limit life-sustaining therapies.

18 jun 2015--Physicians have a responsibility to provide recommendations to families of dying patients, a Loyola University Medical Center critical care physician writes in the journal Chest.

"A physician has a responsibility to present surrogates with the plan of care he or she believes to be in the best application of a patient's authentic values and interests to a specific clinical situation," Paul Hutchison, MD, writes.

Taking the opposite side is Robert Veatch, PhD, of Georgetown University's Kennedy Institute of Ethics. Dr. Veatch writes physicians "have no basis for recommending treatment goals and, even if they did, they would tend to distort the decision-maker's perspective."

Family members or other surrogate decision makers often have no experience in making end-of-life decisions for another person, and they struggle in this role. Making a decision without a recommendation may be overwhelming, Dr. Hutchison writes.

"When the patient's prognosis is uncertain and the treatments are potentially burdensome, surrogates often look to the physician for assistance with the treatment-limitation decisions."

After asking the surrogate about the patient's values, the physician is equipped to offer a recommendation, provided the recommendation reflects the patent's known values and not the physician's personal, political or spiritual beliefs; acknowledges the uncertainty of the prognosis; and is subject to further consideration and discussion with the surrogate. "The recommended plan is never the final word without the surrogate's assent."

Dr. Hutchison explores the physician's role in two common scenarios:

The surrogate asks the physician for a recommendation. Such a request "is an expression of his trust in the physician who has a reciprocal duty to provide guidance and support," Dr. Hutchison writes. "Failure to accept this role amounts to abandonment and requires the surrogate to bear the entire burden of the decision."

The surrogate requests aggressive therapies for a dying patient. Dr. Hutchison explains that treatments should be pursued only if they can provide benefit to the patient. "While physicians should not be individual arbiters of resource allocation at the bedside, medical resources are not infinite, and most would agree that they need to be used responsibly," Dr. Hutchison writes.

Dr. Hutchison notes we do not allow permit physicians to make end-of-life decisions without exploring a surrogate's preferences for treatments. Similarly, it would be odd for family members, who have no medical background or training, to make decisions without a physician's input.

"No matter what the content of the recommendation, however, it must always be offered with humility and with openness to contrasting perspectives," Dr. Hutchison writes. "After all, the physician and surrogate are on the same team and with the same ultimate goal: respect for the interests and dignity of the critically ill patient."

Provided by Loyola University Health System

Belgium study tracks trends in end-of-life decision making

In Belgium, between 1998 and 2007, euthanasia was legalized and palliative care was intensified, which led to an increase in end-of-life decisions and fewer life-ending acts without the patient's explicit request, according to research published online March 11 in the Journal of Clinical Oncology.

07 april 2013—In Belgium, between 1998 and 2007, euthanasia was legalized and palliative care was intensified, which led to an increase in end-of-life decisions (ELDs) and fewer life-ending acts without the patient's explicit request, according to research published online March 11 in the Journal of Clinical Oncology.

Koen Pardon, Ph.D., of Ghent University and Vrije Universiteit in Brussels, and colleagues surveyed physicians who had signed 6,927 select death certificates in 2007 to evaluate ELD trends in patients with and without cancer and compare those results to a similar study completed in 1998, before euthanasia was legalized.

From 1998 to 2007, ELDs increased by 6.7 percent for cancer patients and 14.9 percent for patients without cancer, primarily due to an increase in intensified symptom alleviation (53.8 and 31.7 percent for cancer and non-cancer patients). Euthanasia was also more commonly practiced in cancer versus non-cancer patients (6.8 versus 0.9 percent). Overall, 69.7 percent of cancer patients and 83.5 percent of patients without cancer were involved in making ELDs.

"To conclude, the higher ELD incidence in patients with cancer compared with those without is probably related to differences in disease trajectories and access to end-of-life care," the authors write. "Between 1998 and 2007, during which time euthanasia was legalized and palliative care intensified, overall ELDs increased, including those caused by acts of symptom alleviation and euthanasia, with a decrease in life-ending without explicit request."

More information: Abstract 
Full Text (subscription or payment may be required)

Doctors don't ask about end-of-life plans, study finds

Many patients' charts don't reflect their final wishes, Canadian researchers say.

02 april 2013—There is a lack of communication between doctors and their elderly patients about end-of-life plans, a new Canadian study reveals.

Medical charts documented such plans for only about 30 percent of those who had them, the investigators found.

"These sick, elderly patients on acute care hospital wards have thought about the kind of treatments that they would, or would not, want in the final days, have discussed it with family, and can clearly articulate a preference," said lead researcher Dr. Daren Heyland, scientific director of the Clinical Evaluation Research Unit at Kingston General Hospital in Ontario.

Yet, there has been little meaningful conversation with any member of the health care team, and inadequate documentation as well, Heyland added.

"As a consequence, the elicited preferences of treatments at the end of life only agreed with the order in the medical chart 30 percent of the time. The majority of the disagreement was that patients were saying 'keep me comfortable' and the medical record was saying they were 'for full resuscitation,'" he said.

This lack of engagement of health care professionals in having end-of-life conversations with their patients is not just a problem in Canada, but also in the United States, an expert said.

"I wish I could tell you I was surprised," said Dr. R. Sean Morrison, president of the American Academy of Hospice and Palliative Medicine and director of the National Palliative Care Research Center.

"This has been a recurring problem in health care for many years," Morrison added.

The report was published April 1 in the online edition of JAMA Internal Medicine.

What the difference between the medical record and the expressed preferences of the family means is a crucial one, Heyland said.

"Patients will likely undergo intensification of care at the end of life," he said. "These unwanted aggressive treatments will lead to worse quality of life in the final days, worse quality of death and, of course, waste our finite health care resources."

To find out how well patients' wishes were communicated, Heyland's team had 278 patients at risk of dying within six months and 225 family members complete questionnaires about end-of-life care decisions.

Among these patients, more than 76 percent had thought about their end-of-life care. Of these, nearly 12 percent wanted life-prolonging care, 48 percent had an advance care plan and 73 percent had named a person who could make decisions about their health care, the researchers found.

For patients who made plans with their health care providers, 30 percent had consulted their family doctor, while 55 percent had expressed their wishes to a member of the health care team.

Yet those wishes, or family-made decisions, only showed up on 30 percent of the patients' medical records, the researchers found.

According to Morrison, there are three key reasons why doctors and patients don't communicate about end-of-life care. First, doctors aren't trained in how to talk to patients about end-of-life care. Second, it's not a routine part of care. And third, in some cases, he said, doctors would rather do procedures than have conversations.

To overcome this problem, patients should talk to their doctor and doctors should ask their patients, Heyland said.

"We have started a 'Speak Up' campaign directed to the public and a 'Just Ask' campaign directed to health care professionals," he noted.

Morrison thinks it's the doctors' responsibility to discuss end-of-life care, not the patients' responsibility.

"Patients should feel comfortable raising this, but I think that's a terrible onus to put on patients and families," he said. "It should be your physician who raises it with you. You shouldn't be in the position of having to [say], 'Let me tell you about what I want.' It should be the doctor asking what the patient wants."

More information: For more information on end-of-life care, visit the U.S. National Library of Medicine.

Doctors' Religious Beliefs Strongly Influence End-of-Life Decisions, Study Finds

28 aug 2010— Atheist or agnostic doctors are almost twice as willing to take decisions that they think will hasten the end of a very sick patient's life as doctors who are deeply religious, suggests research published online in the Journal of Medical Ethics.

And doctors with a strong faith are less likely to discuss this type of treatment with the patient concerned, the research shows.

The findings are based on a postal survey of more than 8500 UK doctors, spanning a wide range of specialties, which was designed to see what influence religious belief -- or lack of it -- had on end of life care.

The specialties included those in which end of life decisions would be particularly likely to arise, such as neurology, elderly care, palliative care, intensive care and hospital specialties, and general practice.

The doctors were asked about the care of their last patient who died, if relevant -- including whether they had provided continuous deep sedation until death and whether they had discussed decisions judged likely to shorten life with the patient -- their own religious beliefs, ethnicity, and their views on assisted dying/euthanasia.

Nearly 4000 doctors responded (42% of the total surveyed), and almost 3000 reported on the care of a patient who had died.

Specialists in the care of the elderly were somewhat more likely to be Hindu or Muslim, while palliative care doctors were somewhat more likely than other doctors to be Christian, white, and agree that they were "religious."

But, overall, white doctors, who comprised the largest ethnic group among the respondents, were the least likely to report strong religious beliefs.

Ethnicity was largely unrelated to rates of reporting ethically controversial decisions, although it was related to support for assisted dying/euthanasia legislation.

Specialty was strongly related to whether a doctor reported having taken decisions, expected or partly intended to, end life. Doctors in hospital specialties were almost 10 times as likely to report this as palliative care specialists.

But irrespective of specialty, doctors who described themselves as "extremely" or "very non-religious" were almost twice as likely to report having taken these kinds of decisions as those with a religious belief.

The most religious doctors were significantly less likely to have discussed end of life care decisions with their patients than other doctors.

These attitudes were reflected in support for assisted dying/euthanasia legislation, with palliative care specialists and those with a strong faith more strongly opposed to it. Asian and white doctors were less opposed to such legislation than doctors from other ethnic groups.

The author concludes that the relationship between doctors' values and their clinical decision making needs to be acknowledged much more than it is at present.

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For the Elderly, Being Heard About Life’s End

By JANE GROSS
HANOVER, N.H. — Edie Gieg, 85, strides ahead of people half her age and plays a fast-paced game of tennis. But when it comes to health care, she is a champion of “slow medicine,” an approach that encourages less aggressive — and less costly — care at the end of life.
Grounded in research at the Dartmouth Medical School, slow medicine encourages physicians to put on the brakes when considering care that may have high risks and limited rewards for the elderly, and it educates patients and families how to push back against emergency room trips and hospitalizations designed for those with treatable illnesses, not the inevitable erosion of advanced age.
Slow medicine, which shares with hospice care the goal of comfort rather than cure, is increasingly available in nursing homes, but for those living at home or in assisted living, a medical scare usually prompts a call to 911, with little opportunity to choose otherwise.
At the end of her husband’s life, Ms. Gieg was spared these extreme options because she lives in Kendal at Hanover, a retirement community affiliated with Dartmouth Medical School that has become a laboratory for the slow medicine movement. At Kendal, it is possible — even routine — for residents to say “No” to hospitalization, tests, surgery, medication or nutrition.
Charley Gieg, 86 at the time, was suffering from a heart problem, an intestinal disorder and the early stages of Alzheimer’s disease when doctors suspected he also had throat cancer.
A specialist outlined what he was facing: biopsies, anesthesia, surgery, radiation or chemotherapy. Ms. Gieg doubted he had the resilience to bounce back. She worried, instead, that such treatments would accelerate his downward trajectory, ushering in a prolonged period of decline and dependence. This is what the Giegs said they feared even more than dying, what some call “death by intensive care.”
Such fears are rarely shared among old people, health care professionals or family members, because etiquette discourages it. But at Kendal — which offers a continuum of care, from independent living apartments to a nursing home — death and dying is central to the conversation from Day 1.
So it was natural for Ms. Gieg to stay in touch with Joanne Sandberg-Cook, a nurse practitioner there, during her husband’s out-of-town consultation.
“I think that it is imperative that none of this be rushed!” Ms. Sandberg-Cook wrote in an e-mail message to Ms. Gieg. The doctor the Giegs had chosen, the nurse explained, “tends to be a ‘do-it-now’ kind of guy.” But the Giegs’ circumstances “demand the time to think about all the what-ifs.”
Ms. Sandberg-Cook asked whether Mr. Gieg would want treatment if he was found to have cancer. If not, why go through a biopsy, which might further weaken his voice? Or risk anesthesia, which could accelerate her husband’s dementia?
“Those are the very questions on my mind, too,” Ms. Gieg replied. The Giegs took their time, opted for no further tests or treatment, and Charley came back to the retirement community to die.
Such decisions are not made lightly, and not without debate, especially in an aging society.
Many in their 80s and 90s — and their boomer children — want to pull out all the stops to stay alive, and doctors get paid for doing a procedure, not discussing whether it should be done. The costliest patients — the elderly with chronic illnesses — are the only group with universal health coverage under Medicare, leading to huge federal expenditures that experts agree are unsustainable as boomers age.
Most of that money is spent at certain academic medical centers, which offer the most advanced tests, the newest remedies, the most renowned specialists. According to the Dartmouth Health Atlas, which ranks hospitals on the cost and quantity of medical care to elderly patients, New York University Medical Center in Manhattan, for instance, spends $105,000 on an elderly patient with multiple chronic conditions during the last two years of life; U.C.L.A. Medical Center spends $94,000. By contrast, the Mayo Clinic’s main teaching hospital in Rochester, Minn., spends $53, 432.
The chief medical officer at U.C.L.A., Dr. Tom Rosenthal, said that aggressive treatment for the elderly at acute care hospitals can be “inhumane,” and that once a patient and family were drawn into that system, “it’s really hard to pull back from it.”
“The culture has a built-in bias that everything that can be done will be done,” Dr. Rosenthal said, adding that the pace of a hospital also discourages “real heart-to-heart discussions.”
Beginning that conversation earlier, as they do at Kendal, he said, “sounds like fundamentally the right way to practice.”
That means explaining that elderly people are rarely saved from cardiac arrest by CPR, or advising women with broken hips that they may never walk again, with or without surgery, unless they can stand physical therapy.
“It’s almost an accident when someone gets what they want,” said Dr. Mark B. McClellan, a former administrator of Medicare and now at the Brookings Institution. “Personal control, quality of life and the opportunity to make good decisions is not automatic in our system. We have to do better.”
The term slow medicine was coined by Dr. Dennis McCullough, a Dartmouth geriatrician, Kendal’s founding medical director and author of “My Mother, Your Mother: Embracing Slow Medicine, the Compassionate Approach to Caring for Your Aging Loved One.”
Among the hard truths, he said, is that 9 of 10 people who live into their 80s will wind up unable to take care of themselves, either because of frailty or dementia. “Everyone thinks they’ll be the lucky one, but we can’t go along with that myth,” Dr. McCullough said.
Ms. Sandberg-Cook agrees. “If you’re never again going to live independently or face an indeterminate period in a disabled state, you may have to reorganize your thinking,” she said. “You need to understand what you face, what you most want to avoid and what you most want to happen.”
Kendal begins by asking newcomers whether they want to be resuscitated or go to the hospital and under what circumstances. “They give me an amazingly puzzled look, like ‘Why wouldn’t I?’ “ said Brenda Jordan, Kendal’s second nurse practitioner.
She replies with CPR survival statistics: A 2002 study, published in the journal Heart, found that fewer than 2 percent of people in their 80s and 90s who had been resuscitated for cardiac arrest at home lived for one month. “They about fall out of their chairs when they find out the extent to which we’ll go to let people choose,” Ms. Jordan said.
Kendal, where the average age is 84, is generally not a place where people want heroics. Dr. George Klabaugh, 88, a resident and retired internist, found himself at the center of controversy a few years back when he tried to revive a 93-year-old neighbor who had collapsed from cardiac arrest during a theatrical performance. Dr. Klabaugh, who was unaware that the man had a “Do Not Resuscitate” order, said he regretted his “automatic reaction,” a vestige of a professional training that predisposes most physicians to aggressive care.
Ms. Jordan surveyed Kendal residents and found only one that wanted CPR — Brad Dewey, 92, who dismissed the statistics. “I want them to try anyway,” he said. “Our daughter saved a man on a tennis court. Who’s to say I won’t recover?”
Some of the 400 residents, who pay $120,000 to $400,000 for an entry fee, and monthly rent from $2,000, which includes all health care, pursue no-holds-barred treatment longer than others. One woman, for example, arrived with cardiac and pulmonary disease but was still capable of living in her own apartment. First, she had cataract surgery that left her vision worse. Next, during surgery to replace a worn-out artificial hip, her thigh bone snapped. She spent a year in bed and wound up with blood clots. Then she broke the other leg.
Only then, Ms. Jordan said, did the woman decide to forgo further surgery or hospitalizations. The woman was too ill to be interviewed.
Some of those most in tune with slow medicine are the adult children who watch a parent’s daily decline. Suzanne Brian, for one, was grateful that her father, then 88 and debilitated by congestive heart failure, was able to stop medications to end his life.
“It wasn’t ‘Oh, you have to do this or do that,’ “ Ms. Brian said. “It was my father’s choice. He could have changed his mind at any time. They slowly weaned him from the meds and he was comfortable the whole time. All he wanted was honor and dignity, and that’s what he got.”