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 “good death” 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 least two-thirds did. The reason for the dramatic shift can be attributed to beliefs regarding which option offers a “good death.” Those attitudes have changed yet again in the last 50 years. By 2017, 29.8 percent of deaths by natural causes occurred in hospitals, and 30.7 percent at home, according to a report in the New England Journal of Medicine. “There has been a kind of cultural shift that has romanticized dying at home and made it the only way to die,” said Carol Levine, an ethicist at the United Hospital Fund in New York. Experts predict that the trend will continue for some time to come, with even more people preferring to age in place. Aging in place, however, requires planning and preparation.
Why You Need to Speak Up Now
If you prefer to spend your final months or years at home, now is the time to have difficult conversations about end-of-life care with your loved ones. It may not be easy to sit down and discuss your wishes; however, it is important that the people who will be caring for you at the end of your life know how you feel about end of life care. Fewer than half of all seniors have completed advance directives, which often specify that doctors should not take extreme measures to prolong life.
A Case Study
Margaret Peterson, 58, a fellow at the Chicago Center for Family Health, cared for her terminally ill husband, Dwight, at home for four long years. A paraplegic adamant that he wanted to die at home, he was discharged from a hospital in 2012 and enrolled in hospice care, because he was not expected to survive long. But he confounded expectations, living for four years. Ms. Peterson was his caregiver, along with a home health aide once a week and nurses from a hospice. The burden was crushing, she recalled, and her husband’s suffering in the last few days seemed needless.
“It just went on and on and on,” she said. “The model of care wasn’t designed to give me any respite. It was absolutely exhausting.” When he had a terrible bedsore on his foot that needed care, Ms. Peterson knew she did not have the training to help him. A friend, a vascular surgeon, offered to come several times a week to treat the wound. “It was wonderful, but it’s like these GoFundMe things,” she said. “We should not have to resort to a doctor to do us an enormous favor.”
For the last four days of his life, Mr. Peterson was in excruciating pain. Still, he did not want to return to a hospital, because he did not want to die there. “He had way, way more pain than he needed to have,” Ms. Peterson said. Her husband died on March 6, 2016, from deterioration and infection of his hips and pelvis, a consequence of his paraplegia. “There is a kind of fantasy where if you make all the right choices, you get this beautiful and peaceful death,” she added. “But you can do everything 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, perhaps appropriately, shifting the site of care to where patients and families say they want to be,” said Dr. Sean Morrison, chair of geriatrics and palliative medicine at the Icahn School of Medicine at Mount Sinai in New York. Unfortunately, however, that means that many terminally ill patients wind up in the care of family members who may be wholly unprepared for the task.
“Hospice is asked to do a big lift,” he said. “They get a fixed payment, a daily rate for patients, so they cannot offer many services. They are asked to be very effective, but on a razor-thin budget.”
“I don’t think families or caregivers understand what it’s like to die at home,” she said. “They will need to understand how to manage symptoms, like pain or shortness of breath or confusion. 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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