"Maybe I'm not dying after all," she said after an ambitious attempt at breakfast. "Nothing would make me happier," I responded, trying to hide my sadness at watching my dearest aunt wither away.
When doctors told Aunt Betty that the stroke she suffered two weeks prior had affected her ability to swallow, she courageously maintained her assertion that she would not have a feeding tube inserted. Having watched her own mother live with a feeding tube for four quiet, unresponsive years convinced her that she "would not live like that."
Despite my concern that she did 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 receive hospice care.
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.
Officially, hospice is appropriate when life expectancy is six months or less. Typically, the goal of hospice is patient comfort and improving the patient's quality of life with effective symptom management. Today, there are more than 4,700 hospice programs in the United States. In 2007, nearly 1.4 million people chose hospice.
Removing the stigma
Studies have shown that the cost of hospice care frequently is less expensive than conventional care. Researchers at Duke University found that hospice reduced Medicare costs by an average of $2,309 per hospice patient.
Additionally, the study found that Medicare costs would be reduced for seven out of 10 hospice recipients if hospice had been used for a longer time. Less high-cost technology is used, and family, friends, and volunteers provide 90% of the day-to-day patient care.
For employers, the lower cost of hospice care can lead to health care savings. Yet, the majority of patients in hospice receive an average of 21 days of hospice care. That is hardly enough time for optimal management of a patient's symptoms. The National Hospice and Palliative Care Organization recommends 60 days.
Contributing to this underutilization are the myths regarding hospice care, such as, "Hospice is only for cancer patients," and "Patients go there when nothing else can be done."
Among the many solutions being offered to improve our health care 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 mean more people living with chronic, life-limiting illnesses that may benefit from hospice care. For HR/benefits professionals, such demographic shifts open the door to educate employees most importantly, caregivers about hospice both to improve their peace of mind and minimize presenteeism.
For your employees who are caring for loved ones who are ill, that means greater comfort, knowing that their loved ones are getting the attention and care that they deserve.
As Aunt Betty lived out her last days, she maintained her wry wit and often shared it with her visitors. "This is a one-horse race, and the horse is winning," she often quipped. Thanks to the support of her hospice team, she was offered a comfortable, dignified and graceful death at home.
Contributing Editor Betty Long is a registered nurse who founded Guardian Nurses Healthcare Advocates, a health care advocacy firm that has helped thousands of patients navigate the health care system and saved millions of dollars in health care costs.
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