Caring for the Dying

Hospice comforts both patients and families
ILLUSTRATION BY brittany inglese

Americans don’t do death very well. Despite our proclivity for violent movies and television, we shy away from death when it’s the real thing.

“We are in a society in which we don’t talk about death and dying. We don’t admit that any of us is going to die, and we’re always shocked to hear that there’s nothing more that can be done [for a dying person],” says Lois Ferguson, MS, RN, hospice director at Rockingham Visiting Nurse Association & Hospice. “We think, ‘We’re in the most advanced medical system in the world, life-saving treatments are discovered every day, so my loved one will beat this and never have to face a terminal situation.’”

Hospice helps patients and families come to grips with the reality that death brings, and marks a shift in goals from cure to comfort when it appears that further treatment will only increase the patient’s symptoms without prolonging life. It is a philosophy of care that first garnered widespread attention from the medical community in the 1930s; a holistic approach that takes into account the physical, psychological, psychosocial and spiritual needs of patients and their families, says Donald B. McDonah, MD, medical director of the Palliative Medicine Program at St. Joseph Hospital in Nashua. “Hospice is care at the end of life to provide comfort and allow people to live as comfortably as possible for as long as possible until the day they die,” he says.

The suggestion to begin hospice for a patient might come from nursing staff, family members, patients themselves or the patient’s physician might recommend it. Hospice care commonly is delivered via an interdisciplinary team that aims to alleviate pain and suffering and enhance the patient’s overall quality of life.

Perhaps understandably, people do not always embrace hospice with open arms. “Hospice is a scary word to people because it means dying,” McDonah says, but some feel better about agreeing to hospice when they learn about the practical benefits it brings. As a Medicare component, hospice can offer 24-hour coverage to hospice patients, in addition to providing coverage for medications and equipment related to a patient’s illness, McDonah says. And, importantly, hospice patients needn’t leave their current living quarters — whether they are in a hospital, nursing home, personal home or other setting — to receive hospice care. Instead, hospice team members travel to the patient.

Each of us can likely relate to the difficulty of accepting the underlying meaning of hospice: by Medicare’s definition, the life expectancy of a hospice patient must be six months or less (although the patient’s status is reviewed regularly and the benefit can be renewed). But experts say that people should not think of it as waving the proverbial white flag. “I try to help them see that it’s not so much giving up as it is, as the Buddhists say, letting go. When the burden of the treatment outweighs the benefit, it’s OK to let go of the treatment. Sometimes all people need is permission,” says Patrick L. Clary, MD, medical director of Rockingham Visiting Nurse Association & Hospice, Palliative Care Services at Exeter Hospital and other New Hampshire facilities.

Resistance to hospice comes “partly because people don’t know what it is,” Clary says. “They think, ‘Oh, that means death.’ And too often hospice is brink-of-death care,” he says, because doctors, patients and families are reluctant to talk about it. “Doctors are trained to treat death as failure,” Clary says. “But death isn’t failure; death is what we all face.”

With doctors who don’t want to frighten patients with talk of hospice, patients who don’t want to bring it up because they are afraid of what they might be told and family members who do not want to give up on their loved one, many people who could benefit from hospice care miss out. Nationally, about a third of patients receive hospice services for less than seven days, Ferguson says. “This is a benefit that’s intended to be available for the last six months of life but the fact of the matter is, about half the patients are on [hospice] about two weeks or less.” Research shows that even a short time in hospice can be of great value to patients and families, Ferguson says, and the most common comment she sees on follow-up surveys is “I wish I had your services longer.”

“I went into hospice work when my brother died … and I realized how difficult it was to go through bereavement and how little we were helping people,” Clary says. “We can’t keep people from dying, but we can certainly make sure that physical suffering is minimal” and accompany families through a difficult experience. “We can make sure that they’re not in pain and they’re not dying in a wet bed, ignored. That used to be the way it was.”

With today’s hospice services, more patients are able to spend meaningful time with family and friends and have an opportunity to engage in activities that are important to them — without feeling very ill while doing so. “One person in five dies suddenly, with no time for hospice care,” Clary says. “I used to think I wanted to die suddenly — I mean, just so it would be over, with no suffering. Now I want to have a chance to say goodbye and that’s something that hospice nurses and patients have taught me.”

Although hospice is more accepted than it once was, there needs to be a greater understanding of what hospice is about, McDonah says. Patients and families should consider that hospice can provide what they need and wouldn’t have otherwise. “Hospice allows you to live much more comfortably until you die. In fact, it’s been shown that people in hospice live longer,” he says. “We still have a long way to go because we still equate hospice with dying,” McDonah says, “and I think we need to say that hospice is really for living.”  

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