Who Said Anything about Hospice?

Recently the husband of an elderly client was presented with the idea of calling in hospice care for his wife who has been struggling with a debilitating illness for several years.

"Why would we need hospice?" he wondered. "Why would I want to send her somewhere to die? She's doing fine."

As I listened to his troubled words, I was reminded of how much work we have to educate our clients about what "time for hospice" means. I was also reminded of the overwhelming flood of emotions I felt three years ago when a doctor announced to my family that my father-in-law should start thinking about hospice. We didn't hear the words, helpful, stay home longer, pain management, nursing visits 24/7. We heard, I can't fix this man. He is dying.

We knew that the chances of him surviving from his cancer was less than five percent. We knew his body had been wasting away, that he needed a feeding tube to get nourishment and that the pain kept him awake night after night. But, it wasn't until the doctor said, "Let's talk about hospice care," that we really grasped the possibility that this dear man would not be in our lives for long. So remembering these feelings, I listened to the fear in the husband's voice and searched for words of comfort and assurance and for the best way to start talking to him about hospice care.

David Kessler writes about hospice in his book The Needs of the Dying (2000).

"When I first began working with the dying in hospice settings in the early 1980s, I thought of a hospice as a physical location, a facility where the terminally ill were cared for. Through my work, I came to realize that hospice is a philosophy, a way of caring for loved ones." During a Death and Dying workshop I attended a few years ago Kessler described the difficulty many physicians have in discussing hospice care with their patients because they felt they had failed the patient. Over time, more doctors are becoming comfortable discussing hospice with their patients and they even stay involved in the care throughout the patient's lives as the primary decision maker for medication changes and procedures.

Hospice is a team approach to care. It is the patient's physician working with a team of nurses, social workers, aides, chaplains and volunteers to provide the best care possible for the patient and family in the home. For our client hospice care would ease the physical burden of care by providing help with bathing three times a week, a nurse visiting his wife at their home rather than the two of them trekking out into the cold to see the doctor, medication delivered to the home and peace of mind knowing that he can call the nurse in the middle of the night if his wife becomes uncontrollably agitated or in pain. Signing up for hospice doesn't mean that our client will die any sooner; however, it may mean that her quality of life will be improved for the duration.

The challenge for us as geriatric care managers is to communicate these benefits to our clients in the most sensitive and timely manner. I've learned through my experience working with families that hospice care is an emotionally-loaded subject requiring a great deal of skill, finesse and intuition. I've elicited more tears and awkward moments than I'd like to admit because I wasn't sure how to talk about it. Over time I've learned to approach the subject carefully with our clients. Questions like, "What do you want to do when you can no longer care for yourself (or your wife)?" is a better opening than, "Let's talk about how great hospice is." Also, asking them "What would make their life easier?," works better than, "You need help now!"

A friend of mine once told me to never turn down help. It seemed trite at the time, but I've never forgotten it. It's hard to admit that we can't do something, regardless of the reason. Caring for someone with a terminal illness is exhausting work, especially later in the disease process when the person can no longer handle daily activities like bathing, toileting and self-feeding.

"If you find that you insist on trying to do everything yourself without help, try to figure out your motivation," suggests Joan Furman and David McNabb in Practical Wisdom for the Dying & Their Caregivers (1997). With family members scattered across the country, help is not always readily available. Then, the issue becomes a financial matter. The average middle-class family can't afford to hire caregivers at a rate of $16-$20 an hour. At the usual four-hour minimum per day, the cost would be around $500 a week. Or maybe they can afford the costs for the short-term but they're terrified that it will deplete their life savings leaving the survivor destitute. Long-term care insurance can offset this expense significantly, but many people don't have it. Caregivers also tend to refuse help because they believe the patient will think they are uncaring. What they don't realize is that they are at a high risk for caregiver burnout. Resentment, depression, depersonalization and illness are sited as common signs of caregiver burnout.

Hospice care in the home is covered at 100% by Medicare Plan A. It is designed to provide support to families who are caring for a terminally ill person. This support includes medication management, weekly nursing visits and 24/7 nursing consultation, help with bathing two or three times a week, a social work visit for emotional support and planning a couple times a month, a chaplain visit for spiritual support and funeral planning once a month and a weekly one-hour visit from a volunteer. The hospice staff are trained to understand and deal with issues of dying. Why turn this kind of help down? It's true that it doesn't replace the need for a sitter or caregiver for blocks of time, but it does share the burden of care. You don't have to do this alone and you don't have to wait until the final weeks of life to get this help...Lauren Kelley LMSW, CMC

The Needs of the Dying, David Kessler

The need to be treated as a living human being.

The need to maintain a sense of hopefulness, however changing its focus may be.

The need to be cared for by those who can maintain a sense of hopefulness, however changing this may be.

The need to express feelings and emotions about death in one's own way.

The need to participate in decisions concerning one's care.

The need to be cared for by compassionate, sensitive, knowledgeable people.

The need for continuing medical care, even though goals may change from "cure" to "comfort" goals.

The need to have all questions answered honestly and fully.

The need to seek spirituality.

The need to be free of physical pain.

The need to express feelings and emotions about pain in one's own way.

The need of children to participate in death.

The need to understand the process of death.

The need to die in peace and dignity.

The need not to die alone.

The need to know that the sanctity of the body will be respected after death.