Tag Archives: end of life

Sooner Rather Than Later: The Intent of National Healthcare Decisions

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By Emmanuel Hospice

It might be a stretch to say we celebrate National Healthcare Decisions Day, but to Erica Beitel, it’s certainly something she honors and observes.

It is important to have end-of-life care and death discussions so everyone understands your final wishes. (Supplied)

Though still shy of 30-years-old, she’s already had a conversation and drawn up documents in response to “the talk” about end-of-life care and death that many who are more than twice her age have not or aren’t willing to initiate.

“I had a loved one who was in a car accident,” she explained. “They couldn’t make their own decisions about healthcare. It was an unbelievably tragic episode that put the issue front and center for me.”

Beitel’s perspective is also unique because she works as a healthcare professional, serving as a social worker for Emmanuel Hospice. The role places her in front of people every day who are making tough decisions – and in many cases wishing they’d considered their futures much earlier.

That’s the whole point of National Healthcare Decisions Day on April 16 – to encourage adults of all ages to plan ahead for a health crisis. It’s typically recognized during the same week that includes “tax day” in reference to Benjamin Franklin’s famous quote, “nothing is certain except death and taxes.”

“This day is an annual reminder for people to consider making healthcare decisions for a time when they may not be able,” Beitel said, “and that includes everything from making advance care directives to choosing an advocate to honor your decisions about end-of-life care.

“Sometimes the biggest barrier is when patients are ready to opt for the comfort and care route that includes hospice, but the caregiver isn’t on board. They feel the patient is giving up hope, but hope can be redefined and can look different depending on where you are on your journey.”

Beitel also points out that people avoid the talk because “it’s a vulnerable space to enter, or you don’t think death or dying is imminent.” Indeed, having a talk about final wishes acknowledges the tough topic of death itself. Even with groundbreaking books like Elisabeth Kubler-Ross’ book, “On Death And Dying,” in 1969, which revolutionized the public’s perception of death, many of us avoid the subject.

Beitel noted that it’s arguably easier than ever to tackle such challenges, thanks to organizations and websites that exist solely to promote open dialogue, including TheConversationProject.org. The site and others like it provide step-by-step suggestions for how to prompt the conversation, what issues to confront and even where to stage the conversation, such as the kitchen table, at a restaurant or during a walk.

Beitel said she wishes more people would approach advance planning like they do in arranging for home and auto insurance or providing a friend a spare key to their home in case of an emergency. We spend countless hours planning weddings, but recoil at the thought of devoting the same energy to our last wishes.

After having the talk, the next step is to take action, arranging for an advocate and creating directives, a task eased by the availability of free forms from a host of sites, including CaringInfo.org. Lawyers will also assist, usually for a fee.

“What some family members sometimes don’t realize is that a patient might endure the medical system for so long that they’re just physically spent and want to be home to enjoy what they can of the time they have left – to spend it with family and friends.

“Making that wish, or other wishes, known can prevent an ambiguous situation ahead of time. It’s also a gift to your loved ones. It’s lifting a burden from their shoulders.”

Many talks on end-of-life wishes end in confusion

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By Dennis Thompson, HealthDay

 

You’ve filled out a living will, and designated a surrogate to make medical decisions if you’re incapacitated.

 

But, your end-of-life planning may not be done yet.

 

That’s because, according to a new study, your surrogate may still not have a clear idea about what you really want done in a crisis situation—even after you’ve discussed your wishes with them.

 

In the study, seven out of every 10 surrogates didn’t have an accurate understanding of their loved one’s wishes regarding potentially life-altering medical treatment, even though both believed they had adequately discussed the topic.

 

“There were a lot of surrogates in those pairs where they both said, ‘yes, we’ve had this communication,’ who didn’t have a good understanding of the patient’s goals of care,” said lead researcher Dr. Terri Fried. She is a professor of geriatrics with the Yale School of Medicine.

 

The surrogates couldn’t accurately say whether their loved one would want treatment even if afterward they would have to live in extreme chronic pain or with severe mental or physical impairments, Fried said.

 

“Those are the kinds of things that make people say, ‘Oh, maybe I don’t want to get life-sustaining treatment if that’s the way it’s going to leave me,’” she explained.

 

These results show health-care professionals need to take a more active role in helping patients make end-of-life preparations, and that includes facilitating in-depth conversations between them and their chosen surrogates about their preferences, Fried said.

 

“It’s becoming more a part of the responsibility of primary care to make sure this happens as part of health maintenance, the same as flu shots or cancer screening,” Fried said. “We need to do a more thorough assessment of what patients have done and haven’t done, so we know what they still need to do.”

 

For their study, Fried and her colleagues interviewed 350 veterans, all aged 55 or older. The researchers also separately interviewed their end-of-life surrogates.

 

Just over half of the surrogates were spouses. Another 27 percent were children. The rest had other relationships with the veterans, according to the study.

 

About two of every five veterans hadn’t bothered to complete a living will or officially designate someone as their surrogate (health care proxy), or talked about the quality of life they’d like to maintain near the end, the findings showed.

 

And often, surrogates remained in the dark about the loved one’s wishes even if both agreed that they had discussed the matter.

 

Only 30 percent of surrogates who thought they’d talked it over could display an accurate knowledge of their loved one’s desires regarding quality versus quantity of life, the researchers found.

 

That’s better than the performance of surrogates who hadn’t had the conversation (21 percent) or pairs that disagreed whether they’d discussed the matter (15 percent), Fried noted.

 

But that still leaves a majority of people in a position of thinking that their surrogate knows their wishes when the person really doesn’t, the study authors pointed out.

 

“Part of it is that patients and surrogates don’t really know what the things are that they ought to be talking about,” Fried said.

 

In joint interviews conducted after the main study, many of the pairs said that “after you asked us those questions, we realized these are the things we need to sit down and talk about,” she added.

 

Dr. Timothy Farrell is an associate professor of geriatrics with the University of Utah School of Medicine in Salt Lake City. He said that “a visit with a physician is often the first time that such a discrepancy may become apparent.”

 

Doctors who treat the elderly should consider end-of-life conversations as “anticipatory guidance,” similar to the guidance provided parents during well-child visits, Farrell said.

 

Either a doctor, a physician assistant, a social worker or some other health-care professional can help lead a facilitated discussion that ensures someone’s wishes have all been communicated to the surrogate, he suggested.

 

“Being proactive is the key, (as is) regularly coming back to this topic before the crisis occurs,” Farrell concluded.

 

The study was published in the Journal of the American Geriatrics Society.

 

Reprinted with permission from Spectrum Health Beat.

Many Americans face pain, depression in their final year

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By Amy Norton, HealthDay

 

For a growing number of Americans, the final year of life is marked by pain, depression and other distressing symptoms, a study has found.

 

Experts said the study, published in Annals of Internal Medicine, highlights disturbing shortcomings in the U.S. health care system.

 

Researchers found that between 1998 and 2010, the number of Americans who suffered pain in their last year of life rose from 54 percent to 61 percent.

 

Meanwhile, the prevalence of depression rose from 45 percent to 57 percent, while other symptoms — such as breathlessness, confusion, severe fatigue and incontinence — either increased or did not improve.

 

“These findings are troubling,” said senior researcher Dr. Karl Lorenz, of the Pardee RAND Graduate School and the University of California, Los Angeles.

 

The increase in end-of-life symptoms, Lorenz said, has occurred despite national efforts to improve end-of-life care, dating back to the 1990s.

 

Those efforts have made a difference. The number of Americans in hospice care doubled between 2000 and 2009, the study noted. Hospice care focuses on easing symptoms and improving quality of life for people with a terminal illness.

 

But often hospice care isn’t offered until the last few weeks or days of life, Lorenz said.

 

“It’s often ‘tacked on’ to more-intensive care,” he said.

 

However, another expert said the findings are not actually about the typical American’s final year of life — because many people with chronic diseases are suffering these symptoms long-term.

 

“I think the findings are very valid, but the conclusions about what they mean are not,” said Dr. Sean Morrison, who directs the Hertzberg Palliative Care Institute at Mount Sinai Icahn School of Medicine in New York City.

 

“I think you’d see a high prevalence of these symptoms if you looked at older adults’ last two years of life, or last three, or last five,” Morrison said.

 

The issue, he said, is that more and more Americans are living longer with chronic ills — from heart and lung disease, to painful arthritis, to Alzheimer’s disease. At the same time, the health care system has grown increasingly specialized and “organ-specific,” with less focus on primary care.

 

“We’re doing a very poor job addressing the multiple health conditions so many older Americans have,” Morrison said. “We’re focusing on treating organs, and not on improving people’s quality of life.”

 

Morrison said the health care system — including medical schools — needs to pay much more attention to palliative care.

 

Palliative care refers to therapy that focuses on easing physical or psychological symptoms, rather than curing a disease. Hospice care, which is intended for people with a limited time to live, is one form of palliative care.

 

Other forms, though, can start as soon as a serious medical condition is diagnosed, and given along with treatments aimed at battling the disease. Usually, a team of providers, including nurses, nutritionists and social workers, is involved.

 

But Morrison said that to many people, including doctors, “palliative” is synonymous with dying. So it’s often not offered, even if it’s locally available.

 

“Other research shows that the overwhelming majority of Americans do not have access to high-quality palliative care,” Morrison said.

 

The current findings are based on a periodic health survey of older Americans. Between 1998 and 2010, slightly more than 7,200 study participants died, and their family members were asked about symptoms their loved one had suffered in the last year of life.

 

Over time, problems like pain, depression, periodic confusion and incontinence grew more common. Other symptoms, such as fatigue and severe weight loss, held fairly stable.

 

Lorenz said part of the increase could be due to awareness. More doctors may be asking family members about those symptoms — which would be a good thing, he said.

 

But the fact that pain and other distressing symptoms are so common is disturbing, he said.

 

Morrison agreed. “This really is an indictment of the health care system,” he said. “And the public should be outraged.”

 

He and Lorenz suggested that older adults ask their doctors about any palliative services available for their symptoms — at any point in the course of a disease.

 

Medicare covers hospice care, and many Medicare Advantage plans pay for other palliative services, Morrison noted.

 

But relatively few research dollars, he added, go into palliative care. “We invest so much in finding disease cures,” Morrison said. “We should also be investing in making life better for the people living with these diseases right now.”

 

Reprinted with permission from Spectrum Health Beat.

Caregiver challenge: Needs double as end of life nears

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By Maureen Salamon, HealthDay

 

Reliance on caregivers doubles as people near death, and half of those caregivers—typically unpaid family members—report having no time for themselves, a new study indicates.

 

The research used a nationally representative sample of about 2,400 older adults in the United States. The study authors found that caregivers provided nearly twice the number of hours of help each week to dying individuals than to those not at the end of life.

 

“We were certainly aware when dealing with end-of-life care that families are mostly involved, but we couldn’t quantify that prior to this [research],” said study author Dr. Katherine Ornstein. She’s an assistant professor of geriatrics and palliative medicine at the Icahn School of Medicine at Mount Sinai in New York City.

 

More than 34 million Americans provided unpaid care to an adult aged 50 or older in the past 12 months, according to 2015 figures from the National Alliance for Caregiving and AARP. Most caregivers are female.

 

Ornstein and her team drew from two nationally representative surveys in which caregivers in the United States reported their experiences caring for dying adults over age 65. The researchers contrasted this data with that of other caregivers providing ongoing care.

 

Older adults were classified as being at the end of life if they died within 12 months of the surveys’ completion.

 

The study found that dying adults had an average of 2.5 caregivers assisting them. Those near the end of life received 61 hours of help per week compared to 35 hours of help per week for older adults who weren’t at the end of life.

 

More than one-third of the end-of-life caregivers reported physical difficulty related to their duties. Just over half reported having no time for themselves. These figures were 21 percent and 40 percent, respectively, for other caregivers.

 

Nearly nine in 10 caregivers are unpaid, according to the study. For end-of-life caregivers who were spouses, nearly two-thirds reported receiving no help from family or friends.

 

“What we see now is, on average, there are 2.5 people helping someone at the end of life. You can imagine if they don’t have that, it’s much more difficult,” Ornstein said. “When spouses are serving as caregivers, the majority are reporting doing it alone and have the [most challenging] consequences.”

 

Barbara Coombs Lee is president of Compassion & Choices, a Washington, D.C.-based advocacy organization for patients’ rights and end-of-life issues. She pointed out that the caregivers surveyed in the new study didn’t necessarily know ahead of time that the person they were caring for was at the end of life.

 

This lack of awareness may have increased caregivers’ stress levels, she said.

 

“This told me the caregivers were probably struggling, not knowing this was an end-of-life situation. Our [organization’s] research indicates that uncertainty about decision-making is an inherent and extremely powerful source of stress,” Lee said.

 

“I would guess that many of these people didn’t know they were dying … so they pursued heroic, torturous, futile treatment,” she added. “Often the default decision [to continue treatment] increases the caregiver burden.”

 

Ornstein said she hopes greater awareness of the family burden of caregiving, especially at the end of life, comes from her research.

 

“We need to think about expanding access to palliative care services, which can help facilitate the delivery of supportive services to families earlier,” she added. “And we can see how we need to provide more paid family leave so families can provide the support we’re pretty much expecting them to provide.”

 

Lee agreed with the need for expanded access to hospice and palliative care.

 

“One of the big barriers to access to hospice is [an] information gap,” Lee said. “People don’t understand that hospice is appropriate to them in their journey in their illness. Palliative care utilization would go up if people had more candid conversations and were privy to information that physicians have but aren’t sharing.”

 

The study was published in the journal Health Affairs.

 

Reprinted with permission from Spectrum Health Beat.

Local palliative care expert has personal experience with own end of life choices

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Holland Home hopes to help the community better understand advanced care planning with its presentation of the documentary Being Mortal on Wednesday, Oct. 25, from 6:30-8:30 p.m. Based on the best-selling book by Dr. Atul Gawande, the film explores the hopes of patients and families facing terminal illness and their relationships with those who care for them. The film explores the intersection of life, death, medicine and what matters most in the end.

 

Following the screening of the film, Holland Home will hold a panel discussion on the importance of advanced care planning with local palliative care expert, Dr. John Mulder, of Holland Home’s Trillium Institute.  What makes this panel discussion unique is that Dr. Mulder has had his own experience with end of life planning and values-based decision making, when he was diagnosed with terminal lung disease in 2015. Dr. Mulder brings not only his professional expertise, but his personal experience, to his understanding of the importance of end of life care and what is most important to the patient.  He will be joined by Carol Robinson of Making Choices Michigan.

 

“Our hope is that Being Mortal will be a catalyst for families to take a deeper look at end of life care and what they desire the end of life to look like,” said Dr. Mulder.  “The end of life can be more joyful and more meaningful when resources are in place to honor your wishes.”

 

The event is free and will be held at Holland Home’s Raybrook campus, located at 2121 Raybrook Drive SE. No registration is necessary. For more information, visit hollandhome.org or call 616-235-5000.