If you are old enough to be seriously thinking about end of life care, it is crucial that you also plan for that care – particularly if you hope to age at home. A Nashua area elder law attorney at DeBruyckere Law Offices explains why planning ahead is crucial if you hope to age in place.
What Constitutes a “Good Death?”
According to a recent New York Times article, people’s attitudes about what constitutes a “gooddeath” have changed dramatically over the years. Around the turn of the 20th century,researchers tell us that about two-thirds of people died at home. By the 1950s,the majority of Americans died in hospitals, and by the 1970s, at leasttwo-thirds did. The reason for the dramatic shift can be attributed to beliefsregarding which option offers a “good death.” Those attitudes have changed yetagain in the last 50 years. By 2017, 29.8 percent of deaths by natural causesoccurred in hospitals, and 30.7 percent at home, according to a report in theNew England Journal of Medicine. “There has been a kind of cultural shift thathas romanticized dying at home and made it the only way to die,” said CarolLevine, an ethicist at the United Hospital Fund in New York. Experts predictthat the trend will continue for some time to come, with even more peoplepreferring to age in place. Aging in place, however, requires planning andpreparation.
Why You Need to Speak Up Now
If you prefer to spend yourfinal months or years at home, now is the time to have difficult conversationsabout end-of-life care with your loved ones. It may not be easy to sit down anddiscuss your wishes; however, it is important that the people who will becaring for you at the end of your life know how you feel about end of lifecare. Fewer than half of all seniors have completed advance directives, whichoften specify that doctors should not take extreme measures to prolong life.
A Case Study
Margaret Peterson, 58, afellow at the Chicago Center for Family Health, cared for her terminally illhusband, Dwight, at home for four long years. A paraplegic adamant that hewanted to die at home, he was discharged from a hospital in 2012 and enrolledin hospice care, because he was not expected to survive long. But he confoundedexpectations, living for four years. Ms. Peterson was his caregiver, along witha home health aide once a week and nurses from a hospice. The burden wascrushing, she recalled, and her husband’s suffering in the last few days seemedneedless.
“It just went on and on andon,” she said. “The model of care wasn’t designed to give me any respite. Itwas absolutely exhausting.” When he had a terrible bedsore on his foot thatneeded care, Ms. Peterson knew she did not have the training to help him. Afriend, a vascular surgeon, offered to come several times a week to treat thewound. “It was wonderful, but it’s like these GoFundMe things,” she said. “Weshould not have to resort to a doctor to do us an enormous favor.”
For the last four days ofhis life, Mr. Peterson was in excruciating pain. Still, he did not want toreturn to a hospital, because he did not want to die there. “He had way, waymore pain than he needed to have,” Ms. Peterson said. Her husband died on March6, 2016, from deterioration and infection of his hips and pelvis, a consequenceof his paraplegia. “There is a kind of fantasy where if you make all the rightchoices, you get this beautiful and peaceful death,” she added. “But you can doeverything right and still have an unpredictable and tragic experience.”
Why Hospice May Not Be Enough
Most people who want to age at home are planning to rely on hospice. While hospice may help, it may not be enough. Hospice care, usually delivered at home, is more available than ever before. Some 1.49 million Medicare beneficiaries received hospice care in 2017, a 4.5 percent increase from 2016, according to the National Hospice and Palliative Care Organization. At the same time, hospitals have long had financial incentives not to keep Medicare patients for long periods, noted Dr. Diane Meier, a professor of geriatrics and palliative medicine at the Icahn School of Medicine at Mount Sinai in New York. Typically, Medicare pays hospitals per diagnosis per patient, not for the number of days a patient is in the hospital. Administrators “don’t want it to go on for a long time,” Dr. Meier said.
“We are, perhapsappropriately, shifting the site of care to where patients and families saythey want to be,” said Dr. Sean Morrison, chair of geriatrics and palliativemedicine at the Icahn School of Medicine at Mount Sinai in New York.Unfortunately, however, that means that many terminally ill patients wind up inthe care of family members who may be wholly unprepared for the task.
“Hospice is asked to do abig lift,” he said. “They get a fixed payment, a daily rate for patients, sothey cannot offer many services. They are asked to be very effective, but on arazor-thin budget.”
“I don’t think families orcaregivers understand what it’s like to die at home,” she said. “They will needto understand how to manage symptoms, like pain or shortness of breath orconfusion. They are on-call 24/7 and have to be alert to changes at all times.They don’t get to go home after an eight-hour shift.”
Contact a Nashua Area Elder Law Attorney
For more information, please join us for an upcoming FREE seminar. If you have additional questions or concerns about aging in place, or other elder law issues, contact a Nashua area elder law attorney at DeBruyckere Law Offices by calling (603) 894-4141 or (978) 969-0331 to schedule an appointment.
1. Talk to the people who will most likely be caring for you and making decisions for you.
2. Keep your estate plan up to date.
3. Execute the appropriate advance directives.
An advance directive is a legal document that allows you to appoint an Agent to make healthcare decisions for you if you are unable to make them and/or allows you to make end of life medical treatment decisions now while you are still able to express your wishes.
Because neither Medicare nor most basic health insurance policies will pay for long-term care, over half of all seniors turn to Medicaid if they need such care. Even if you hope to age at home, your loved ones may need help and qualifying for Medicaid, without planning ahead, could put your assets at risk.
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