Palliative, Hospice and End of Life Conversations
Why you should have them now
By Liz Seegert
Steve Hetzel knows first-hand about the importance of advance directives. The retired ICU nurse and his wife have had several discussions about their directives (also known as health proxies) and end of life care. He feels good knowing that if he or his wife ends up really ill or hurt, they will stand up for each other’s wishes when it comes to approaching or declining medical treatment. But at the same time, he has yet to put anything in writing. “We just haven’t gotten around to it, but I know we should,” he admits.
Hetzel, 65, is not alone. Putting off those difficult discussions about death and dying, or formalizing the “what if” scenarios is pretty typical, say experts. But as we get older, having a real plan in place can actually foster a sense of relief, knowing that someone else will advocate for your care preferences, if you can’t tell medical personnel yourself.
“We have a real problem facing our own mortality”
“We have a real problem facing our own mortality,” says Dr. Joan Beder, Ph.D., a social worker and associate professor at Stony Brook University on Long Island. “Once a blip occurs, like a parent gets sick, or you lose a good friend to cancer, then it kind of snaps you awake. But we live in a culture that worships youth. We don’t want this on our radar.”
But before you can develop a plan, you need to understand what you’re talking about. Do you know the difference between hospice and palliative care? Or what an advance directive covers? How should you choose a health care proxy?
Palliative care focuses on relief from physical suffering, as well as on the mental, social and spiritual well-being of the person. Anyone, at any stage of a disease, can have palliative care — from diagnosis to cure. Palliative care helps people feel better and lessens the symptoms or side effects of disease or treatment, according to the National Institute on Aging. It improves a person’s quality of life and contrary to what some think, it can be given along with curative treatment (such as chemotherapy for cancer). People receiving palliative care remain under the supervision of their regular doctor or other care provider, and are still treated for their disease, whether or not there’s a terminal diagnosis.
Hospice care focuses on a person’s last six months of life, when curative treatment is no longer an option. Hospice includes palliative care — because the goal is making a person as comfortable as possible. Hospice care can be provided at home, in a hospital, or a nursing home. The National Association of Hospice and Palliative Care Organization, a nonprofit industry trade group, describes hospice as a team-based approach to medical care, pain management, emotional and spiritual support specific to that person’s needs and wishes. Support is provided to the patient’s loved ones as well.
Most people want to die at home, but sometimes that’s not possible. They may require around-the-clock care by family, aides or nurses. Medicare and most private insurance pay for hospice care, however, out of pocket costs or time lost from work by family members can quickly add up. For many reasons, entering a hospital or stand-alone hospice program can be the right decision for both the patient and family.
“Doctors default to doing everything they can to save a life unless they’re told otherwise”
To make sure you get the kind of care you want, regardless of where it’s provided, you will need to complete an advance directive. This document details what types of medical treatment you want, and how aggressively you want to be treated. Advance directives guide choices for doctors and caregivers if you’re terminally ill, seriously injured, in a coma, in the late stages of dementia or near the end of life, according to the Mayo Clinic.
Decisions are based on your personal values, preferences, and discussions with your loved ones. If you are in an accident or have an illness that leaves you unable to talk about your wishes it helps make sure your doctors and family know what treatments you want, and just as importantly, don’t want. For example, would you want a tube to feed you if you couldn’t eat or swallow? How about a machine to help you breathe or to pump your heart? Should doctors try everything possible to keep you alive, no matter how disabled you may become? Or do you believe treatment should stop after a certain point because your quality of life would be so poor?
“Doctors default to doing everything they can to save a life unless they’re told otherwise,” Beder says. “Sometimes, even with an advance directive, an emotional family member may try to override those instructions.” That’s when you need a strong advocate to ensure your wishes are honored.
Signing a “durable power of attorney for health care” (DPAHC) or “health proxy” form allows you to designate someone to carry out health care decisions on your behalf. Choose someone who will make sure that your preferences are followed — and one who will not allow another family member, or even their own preferences, influence those decisions.
Although advance directive policies are determined primarily at the state level, all health care facilities receiving Medicare or Medicaid payments must tell patients of their rights to make choices about the treatment they receive and to prepare advance directives. Health care providers will rely on your advance directive for guidance only when you are no longer able to make decisions yourself and communicate what kind of care you want.
You have to have these conversations, regardless of how difficult they may be, says Hetzel, who has witnessed dramatic conflict between families when a health crisis ensues. “It’s a lot better to have this discussion well in advance, when everyone is calm,” he says. “Then you all know you’re on the same page.” Some doctors will go ahead and treat patients aggressively anyway, mostly because they fear lawsuits from disgruntled family or patients, but Hetzel says it’s still better to have a conversation about your wishes with your family and doctor than not have it.
“Make sure the doctor has a copy of your directive and knows who your health proxy is,” Hetzel advises. While doctors may err on the side of more versus less treatment, it’s still best to have something in writing, and in your file.
Mike C., 67, a retired naval officer and a navigator/weapon system operator, was his father’s medical proxy. “We often spoke of his last wishes, so when the time came, it was clearly understood by me and everyone in our family what would happen. My Dad was so organized, he pre-paid for his funeral and picked out the make and model of the casket at the local funeral home,” he says.
It ensured Mike C. knew exactly what to do after his father developed a devastating post-surgical infection, which ravaged his body. Staying alive meant being hooked to a ventilator and home care for the rest of his life.
His choice, spoken many times over the years, was to “not be kept alive by damn machines with no quality of life,” Mike says. He complied with his father’s wishes, disconnected the ventilator, and his dad passed away within ten minutes. Following his father’s 2003 death, Mike completed his own health proxy and made sure his wishes were clear to his wife and daughters.
“Knowing what you want, and what you don’t want, and expressing that to your loved ones is comforting”
“Knowing what you want, and what you don’t want, and expressing that to your loved ones is comforting,” says Beder, a past president of the Ethical Humanist Society of Long Island. She counsels other members and private clients on end of life planning, from choosing health proxies to planning their own memorial service. She’s also supported numerous patients in the throes of terminal diseases, using techniques like guided meditation to help them cope with their mental, emotional and physical pain.
It’s often the family and friends that want to try “everything,” even when the person might be ready to let go. Sometimes just easing pain and making the person comfortable, rather than insisting on more “curative care” is the best option, according to Beder. It’s really up to the individual.
Getting folks in their 50s to think about this topic is difficult enough, but how do you persuade a Gen X or Gen Y-er to talk about end of life issues if they’re generally healthy? “It’s very hard for younger people to talk about this, but they should,” Beder says. An accident, or serious diagnosis can happen at any time.
“It’s not one conversation. It takes time, and your life situation will probably change over many years. What you want in your 40s or 50s may not be the same as what you want when you’re 70 or 80. Your perspective changes,” says Beder. She recommends visiting The Conversation Project — former journalist Ellen Goodman’s site about end of life issues which can help you jump start this difficult discussion.
“Specific plans make it much easier on your children and siblings during an emotional time. Let them grieve your passing, and not worry about second-guessing your intentions,” Mike C. advises.
While there are probably a thousand other things you’d rather be doing, starting these conversations with your family will ease your mind knowing there’s a plan in place, says Beder. Maybe it will even spur you to tackle some of those bucket list items – traveling, starting a new hobby, or trying something totally out of the box, like skydiving,
About the Writer
Liz Seegert has been reporting and writing about health and general news topics for a wide range of media outlets for more than 30 years. In addition to writing about aging, boomers, and social determinants of health and health policy, she is topic editor on aging for the Association of Health Care Journalists. Her work has appeared in Next Avenue, Consumer Reports, AARP.com, Medical Economics, Cancer Today, among other outlets. She also co-produces the HealthCetera podcast (available on iTunes). You can follow Liz on Twitter @lseegert.
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