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This article appeared in The Home News Tribune’s Health Section.
September 26, 2006
Health Care No One Wants to Talk About
By Shannon Wiese, RN
The 90-year-old man decided he wanted hospice care. His son and daughter had spoken to the hospice social worker and the nurse made the arrangements. A spiritual man, the patient looked forward to meeting the hospice chaplain. The man’s son was happy to know his dad would get a nice shave from the hospice home health aide, while his daughter appreciated that the hospice volunteer would read her dad the newspaper. All the arrangements were made, but a day after arriving home, the man died.
This story is an extreme example of an all too common problem. While more New Jerseyans are finding their way to hospice for end-of-life care, they turn to the service later than they could.
Hospice is a set of services that help patients and families cope with terminal illness. Its goal is to enhance patients’ quality of life and allow them to spend their remaining time at home. It is meant not just for the last few days or the last two weeks, but for the last months of life.
But length of stay for New Jersey hospice patients is typically very short. The median length of stay for New Jersey Medicare hospice patients – this does not include all hospice patients -- is 17 days. South Carolina has the highest median length of stay of 30 days, while Massachusetts has the lowest with 15 days. Break down the New Jersey statistics further and you find that almost half of New Jersey hospice patients have a length of stay of less than two weeks, while a quarter use it for less than a week.
At the same time, terminally ill New Jersey residents spend an average of 15 days in the hospital in the last six months of their lives, nearly four days longer than the national average. Longer stays mean higher costs. On average, Medicare spending in New Jersey during the last two years of life is $39,810 compared with the national average of $29,199. New Jersey patients also spend more time in the intensive care unit during the last six years of their lives, averaging 4.6 days compared with 3.2 days nationally.
Why aren’t terminally ill patients turning to hospice benefits sooner? That’s a complicated question. Predicting when someone will die is not an exact science, and while our health care system is skilled in interventions that preserve life, it’s lax when it comes to initiating conversations about end of life. Hospice enrollment nearly always depends on a physician’s referral, and many physicians are reluctant to open the conversation about a terminal prognosis for fear of taking away the patient’s hope, says Don Pendley, president of the New Jersey Hospice and Palliative Care Organization. Patients and families are also reluctant to open the conversation. “If the health care providers are not bringing this up, does that make me a monster for raising the issue?” family members ask me.
Misconceptions About Hospice
Further complicating matters are misconceptions about what hospice does and does not do. Hospice provides comfort when a cure is no longer possible or curative treatment is no longer desired. Patients don’t have to be "on their deathbed" to receive hospice care.
Some clinicians worry that it’s “too soon for hospice” or that the patient or clinician will be penalized if the patient lives beyond six months. While it is true that a physician must certify that the patient is expected to live six months or less, hospice services need not end at six months. Hospice services can extend well beyond the original six-month life expectancy, should the patient continue to qualify for end-of-life care.
Also, a patient can leave hospice care at any time. If a patient wants to return to curative treatment, such as chemotherapy, radiation or dialysis, he or she can do so. The hospice benefits are still available, should they choose it later.
In addition to medical and nursing services, hospice provides social services and counseling. It offers medical equipment, medications and home health aide services to help with housekeeping and other chores. Hospice provides volunteers to support patient and families. Hospice is typically delivered in the patient's own home, but it can be delivered in a nursing home or an assisted living facility. Other locations can include a hospital or a hospice facility. Hospice also can provide various therapies to enhance the quality of a patient's life, such as speech, occupational and physical therapy. It provides palliative, or comfort care.
It is not just for the elderly or for Medicare patients, but patients of all ages.
Hospice is covered by Medicare Part A, Medicaid and many private insurers. Most hospices have a sliding scale for poor patients and some provide charity care for the indigent. The vast majority of patients and families never receive a bill from hospice.
Finally, hospice neither hastens nor delays death. Hospice seeks to improve the patient's quality of life and allow dying to take place naturally. It will not extend life through artificial or mechanical means, nor will it shorten life through assisted suicide.
Hospice’s goal is to enhance quality of life for patients and families, allowing the terminally ill to spend the remaining time in comfort, surrounded by those they love. But before that can happen, we have to have the conversation about end of life care. And while that conversation is emotionally difficult, regret over losing what could have been in those precious final weeks, is also difficult. An all too common lament I hear from surviving family members is, “I wish we had begun hospice sooner.”
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