A Story About Hospice,Not What You Think
by Betty Long, RN~“Maybe I’m not dying after all,” she pronounced to me after an ambitious attempt at eating her breakfast. “Nothing would make me happier,” I responded, trying to hide my sadness from two weeks of watching my dearest aunt wither away. When doctors told her that she had suffered a stroke, which affected her ability to swallow, 90 years young Aunt Betty courageously opted to maintain her assertion that she would not have a feeding tube inserted.
Having watched her own mother live for four quiet, unresponsive years in a nursing home bed with a feeding tube convinced her that she “would not live like that.” Despite my concern that she not fully understand the consequences of her decision, she quietly said to me, “I’ve had a good life.” So I took her home, to her own home, on hospice care.
Officially, hospice is appropriate when life expectancy is six months or less. Hospice care is not about waving the white flag or giving up hope. It may, however, mean redefining hope. Where a patient terminally ill with pancreatic cancer once hoped for a cure, she may now hope to live out her life pain-free. In Aunt Betty’s case, since she could not swallow effectively, it was about her choosing the direction of her care. And that included choosing not to have a feeding tube placed. Typically, the goal of hospice is patient comfort and improving the patient’s quality of life with effective symptom management.
The first hospice in the United States was established in 1974 in New Haven, CT though it had been more widely known in England. As interest in this country grew, lobbyists began to seek funding, leading to the Medicare Hospice Benefit in 1982. The Medicare benefit has served as the basis of the hospice model of care in this country and as a model for Medicaid and private insurance provision and reimbursement.
Today there are more than 4,700 hospice programs in the United States.* Hospice programs cared for 965,000 people enrolled in Medicare in 2006**, and nearly 1.4 people in the United States in 2007*. Studies have shown that the cost of hospice care is frequently less expensive than conventional care. Less high-cost technology is used, and family, friends, and volunteers provide 90% of the day-to-day patient care at home.
Yet, despite the emerging growth and wider acceptance, the majority of patients in hospice receive an average of 21 days of hospice care (the recommended time is 60). That is hardly enough time for optimal management of a patient’s symptoms. The dying process takes time. Patients and their families need support, information, and care. And that takes time. When patients enter hospice care late in their prognosis, they are missing out on valuable care and attention for not only them, but their family as well.
Contributing to this underutilization are the many and varied myths regarding hospice care. They include “hospice is only for cancer patients,” and “patients go there when there is nothing else that can be done.” Much needs to be done to educate the public about hospice care. If more than 70% of the respondents in a national poll said they would prefer to die at home, how come the reality is that only 25% do?
Among the many solutions being offered to improve our healthcare system, removing the stigma of hospice and redefining what end-of-life care looks like will be critical. The number of people 65 and over is expected to double in the next 30 years. That will undoubtedly mean that more people will be living with chronic, life-limiting illnesses that may benefit from hospice care. Dispelling the myths and removing the stigma about hospice may move us closer as a system to providing quality, highly skilled care to patients at the end of their life.
As Aunt Betty lived her last days, she maintained her wry wit and often shared it with her visitors. One comment that made everyone laugh was, “This is a one horse race and the horse is winning.” Thanks to the support of her hospice team, she was offered a comfortable, dignified, and graceful death. After 23 days, she quietly accepted.
* National Hospice and Palliative Care Organization (NHPCO)
** Centers for Medicare & Medicaid Services (CMS)