When Palliative Care Is What The Patient Wants

A recent study published in the Journal of Clinical Oncology found that despite all the attention to better end-of-life-care and death with dignity, a majority of people who receive life-extending care in the last week of their life had previously expressed their desire to receive only symptom relief and comfort care. The study also found that these "life-extending" measures did not result in any extension of life.

Here are some other findings from the study:

• Most patients—72 percent—choose symptom relief and comfort care when they know they are terminally ill.
• Patients who talk to their doctor about their wishes for end-of-life-care are more likely to get the type of care they desire.
• Quality of life, as rated by caregivers, was higher in patients who did not receive aggressive treatment at end-of-life.

The History of Hospice Care

The end-of-life issues presented in the Journal of Clinical Oncology study are exactly the issues that hospice care tries to address. Hospice is not a new concept. It comes from the word "hospitality." The term "hospice" was first used to describe end-of-life care by Dame Cicely Saunders, a physician who founded St. Christopher's Hospice in London, the first modern hospice care program.

"The patients with the best quality of life and the lowest distress in their last week were those who wished for symptom-directed care and did not receive life-extending measures at the end-of-life." —Journal of Clinical Oncology

In the early 1970s, Dr. Elisabeth Kubler-Ross, author of the best-selling book On Death and Dying, helped introduce the term "death with dignity" to America. In 1974 the first attempt to provide federal funding for hospice care was defeated, but in 1982 Congress included a provision to create a Medicare hospice benefit. Today all American citizens age 65 and older are entitled to hospice coverage through Medicare and hospice is also covered by Medicaid and most private insurance companies.

How Hospice Works

There are now over 3,000 hospice programs around the country, but hospice is not a place; it is a philosophy of care. The hospice goal is to offer comfort and compassion when cure is no longer possible. Most hospice care is given in the home, but hospice care may also be available in hospitals, nursing homes, or private hospice care facilities. Here are the basic requirements to qualify for hospice care:

• A physician has determined that if the disease runs its normal course, the patient has less than six months to live.
• Life-extending or aggressive treatment is no longer working.
• The patient and the family have decided to pursue a course of pain control and symptom management only. This is called "palliative care."

What Hospice Care Includes

The promise of hospice care is to provide a patient with pain control, comfort and dignity at the end of life. There is no attempt to hasten death, nor is there an attempt to extend life. The focus is on providing as much quality as possible, hopefully surrounded by friends and family in a supporting environment. Here is what else you can expect:

• Hospice care is provided by a team of caregivers. This includes doctors and nurses as well as social workers, therapists, spiritual advisors, counselors and volunteers.
• Hospice care provides support around the clock. If home caregivers need a respite or things just become too difficult to manage at home, hospice care can be continued at the hospital or at a hospice care facility. This can be either temporary or permanent depending on the circumstances.
• Hospice care is for families as well as for patients and it continues after the patient has passed. Family support starts at the beginning of hospice care and bereavement care continues for surviving loved ones through the grieving process.

Hospice Care Tips for Caregivers

If you are caring for someone who may benefit from hospice care, the time to start talking about it is now. Studies show that most patients still do not talk about these issues with their doctors and that hospice care is often started too late for patients to take advantage of all the benefits. Here’s how to begin:

• Gather the family together and prepare an Advance Directive that clearly states what type of care your loved one wants at the end of life.
• Share your wishes and a copy of the Advance Directive with your loved one's primary care doctor.
• Find out what type of hospice care is available in your community. The National Hospice and Palliative Care Organization, National Hospice Foundation, and the American Academy of Hospice and Palliative Medicine are all good resources on hospice care.
• Remember that nobody can predict exactly when life will end. Hospice care is always optional. If circumstances change and you want to try more aggressive treatment you always have that ability.