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Early hospice care benefits patients and families

April 2006 Enterprise article by Pam Eimers

The "perfect" death: to die suddenly, perhaps in our sleep, without pain or suffering and without being a burden to our families. That's what most American's report wanting and believe will be their fate. "It's not that I'm afraid to die, I just don't want to be there when it happens," quipped Woody Allen, humorously summing up this common desire.

Statistically, death will not be sudden. Only about 25% of us will be granted our wish to die without notice.

The rest of us will die after a prolonged illness. Chronic illnesses such as heart disease, respiratory disease, dementia, Parkinson's disease and diabetes, to name a few, account for many more deaths than sudden death from heart attack, stroke or accidents.

But we don't need to suffer greatly and we don't have to over burden our families.

It is to care for people living through this prolonged end–of–life process that hospice was established.

A six-month life expectancy is the well-known benchmark for initiating hospice care. "Yet most delay seeking hospice support," says Lillian Hull, Patient Care Services Manager with Yolo Hospice. On average, hospice patients receive care for only 43 days. "We have so much more to offer the patient and family when we have more time."

One reason families delay seeking hospice care is the misconception that a person needs to be near death to enroll. A more prevalent reason is that most of us don't understand how to tell when a chronic disease crosses the line from "chronic" or ongoing, to "life–limiting," meaning that the person has entered the end stages of the disease.

When does a chronic disease become a life-limiting disease, one for which hospice is appropriate?

"Hospice has very strict criteria to follow in determining whether or not a person qualifies," says Hull. Several general changes in a person's health may indicate that beginning hospice care is possible: unintended weight loss, even with a normal appetite; increased incidence of infections; injuries slow to heal; and changes in a person's ability to care for him–or herself.

Still, at this point, many people feel pretty good and manage reasonably well, especially with family help. Why would you want to bring hospice into the picture?

"Developing a relationship with the hospice team early is beneficial," says Judy Alexander, a hospice registered nurse for many years and currently Yolo Hospice CEO. "The whole situation can be less stressful when the family and hospice team are familiar and plans are in place before the patient's condition worsens and a higher level of care is needed."

"It is also helpful for families to have time to explore options before circumstances change and decisions must be made in the midst of an emergency," adds Hull.

The hospice nurse and social worker can help the patient and family identify and accomplish things that are important to them - healing relationships, building a legacy, conducting a life review or completing other tasks that are important to the individual or family.

Many patients wish to record - in journals or on videotape - family stories or words of wisdom for children and grandchildren. Some want to organize boxes of photos. The hospice team, including trained patient care volunteers, will help facilitate these legacy projects.

"A big advantage to beginning hospice earlier," notes Hull, "is that hospice takes over management of many time–consuming tasks." Hospice serves as a liaison between the doctors and the patient and between the insurance carrier, Medicare or MediCal and the family. Hospice also provides some medications, placing orders and even delivering them to the home. If medical equipment is needed such as a hospital bed or shower bench, hospice makes these arrangements and covers the costs. All this allows the family more time to focus on each other and the aspects of their lives that are most valuable.

"A good death is one where both the patient and family are comfortable, confident and at peace," says Hull. "We can help them achieve this final wish."

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Quotes

Judy Norton
"Coping with terminal illness is all consuming for patient and family. As a hospice nurse, I feel it is most important to advocate, respect and use the knowledge we have to make the end of life the most comfortable it can be while always keeping in mind the unique needs of each patient."
~Jody Norton, RN