Care of the dying is one of the most important jobs that a physician or nurse can have. Death, like birth, is a momentous and sacred transition, and good care can give peace and comfort to the patient as well as to his or her family and friends. The dying process is often painful and frightening and good, knowledgeable support can alleviate suffering for all involved.
Hospice care has evolved since its inception in the 1400s to embrace support of the dying both in designated facilities and in patients' own homes. Once a patient and his or her doctor have come to accept that a disease is terminal and that death is imminent (usually 6 months of expected life left) hospice care can usually be arranged to allow a patients last days or months to be as pain and anxiety free as possible, providing caregivers with the help and support they need. Hospice services usually include home visits by nurses and nurse's aids, medications for symptoms control, social worker visits, grief counseling, medical equipment needed for home care and coordination of treatment with the primary physician. Studies have shown that not only are patients in hospice care less expensive than ones with the same diagnosis who are treated with standard medical and curative care, but they often live longer.
Hospice providers are either non-profit organizations or, more commonly now, for profit agencies. Hospice care has gotten increasingly more accepted as physicians and patients have moved away from squeamishness about discussing and planning for death, and now costs Medicare over 12 billion dollars annually. That care, though, according to multiple studies, saves the American taxpayer lots of money compared to treating those patients with aggressive but ineffective treatment aimed at curing their disease.
It all sounds great. So what's the problem?
Hospice care is incredibly and unnecessarily expensive. How expensive? Really expensive.
A hospice patient of mine was alarmed when she saw a statement of what Medicare had paid for her hospice care and showed me her data. She had been placed on home hospice due to a chronic and progressive condition that appeared to be likely to result in her death. After several months of hospice, it became clear that she was, though very sick and incurable, stable and not yet dying. Hospice was discontinued, and she became a curious consumer. Hospice charges a monthly fee for their regular services plus hourly charges for visits by nurses, aids or therapists. Medicare paid her (for profit) agency between $7000 and $9000 monthly for this woman's hospice care. This consisted of a basal hospice fee of over $5000 plus visits by nurses charged at $191 per 15 minutes and nurses aides at $112 per 15 minutes. Nurse's aides usually make no more than $15/ hour in any job they can get, and nurses might make as much as $35/ hour if they are lucky.
This is just way too expensive. And it is positively ridiculous that Medicare pays this amount.
My patient also showed me an account of how much she spent on a private nurse after hospice was discontinued. For about the same amount of time that hospice had spent with her she had shelled out about $230 in a month.
The whole idea of hospice is that care aimed at symptom relief frees the doctor, patient and family of the need to engage in complex medical care that doesn't improve quality of life. This can be a creative and much less stressful type of medical care, with a very focused agenda. It involves very little expensive technology. It is, at its core, not very expensive. Where is all that money going? I'm not sure.
Cutting payments to hospice would lead to outraged wailing and tooth gnashing, and yet hospice astronomically overcharges for their services. We are very dependent on hospice availability at this point since the alternative (aggressive medical care at the end of life) is both more expensive and less effective.If threatened with a significant reduction in payments, many hospice providers would probably cease to do business, leaving us in a lurch.
This is yet another situation in which third party payment has resulted in costs far beyond what a reasonably prudent consumer would agree to pay. Awareness of the problem by physicians and patients can be powerful, but the very fact that such ridiculous excess is occurring so blatantly shows that something is very wrong with how Medicare and other insurance companies reimburse for services, undoubtedly resulting in many billions of dollars of true waste.
I am truly thankful for the kind and compassionate care that various hospice organizations have provided my patients over the years, and I would hate to see this service go away. The whole field of palliative medicine has made death just a little bit easier and has brought compassion and dignity to countless families. With costs as high as these, however, hospice may find that it prices itself right out of our nation's ability to pay.
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