Hospice Patients Alliance: Consumer Advocacy


If you're even contemplating hospice care, you or your loved one must have been diagnosed by a physician with a "terminal illness." What a shock and heartache! No one is truly prepared for such a pronouncement...and to be "certified" as "eligible" for hospice care, the doctor must state that statistically, the illness may cause death within six months or less. 1

That may be so, but some patients live much longer than that, some for years. However, many do pass on within six months or less. It is not really possible for a physician to predict, with absolute certainty, how much time is left. Whatever time is left is so precious and, hopefully, will be lived as fully as possible. That's where hospice care comes in. Quality hospice care can make the difference between overwhelming stress, symptoms which may be unbearable...and living peacefully and meaningfully up to the very end. Hospice is about living, maintaining your dignity, and most of all, about caring for one another. "Hospice is not a place; hospice is a way of caring for one another."

Choosing to use hospice services is an affirmation of the meaning of your life, not giving up. It allows you to optimize the time you have, control symptoms, and do what you need to do. For the families and caregivers, hospice provides the support and training to deal with the crisis that is often part of approaching death. Dealing with symptoms related to the terminal illness is a specialty with unique applications of medications and ways of administering medications that provide for the patient's comfort and well-being. Many physicians and nurses, who are not experienced in hospice care, do not know how to deal with these symptoms.

Specialists in other areas of medicine are not trained in the latest and most effective manner of managing distressing symptoms which arise in as a result of terminal illness. The central focus of hospice is to support the patient and family throughout the course of the illness in a wholistic approach and to manage symptoms (palliative care). Hospice does not attempt to cure or treat the terminal disease itself, but rather serves to promote the comfort and peace of the patient and family.

Choosing hospice means choosing to optimize quality of life, but it also takes an honest realization that we are no longer trying to cure the disease, but working to minimize the symptoms of the disease and keep your loved one comfortable. This is often the stumbling block which keeps patients and families from accessing hospice care sooner. For some, using hospice is "admitting defeat." And some physicians hesitate to refer patients to hospice until the very end, which is really tragic. There is a difficult transition to be made by some physicians from the "curative" care mode (where they're still trying to find the "cure") to the "hospice/palliative" care mode, ...when the realization is made that, at this point, no treatment is available which will have any reasonable chance of success.

For these reasons, (resistance on the part of patients, families and doctors to "giving up"), many hospice patients do not receive hospice care until quite late in the course of their illness: some as late as two weeks or less before they pass on. While hospice certainly does help even at this late point, research shows that patients who enter hospice earlier on in their illness actually benefit more and live longer! Hospice staff and knowledgeable physicians can prevent some of the distressing symptoms which interfere with proper hydration and nutrition and thereby, many patients live longer. Nausea and vomiting can indirectly hasten death, while controlling these symptoms can extend life expectancy.

Hospice counselors can assist the family and patient complete their "unfinished business." Whether social workers, psychologists or chaplains, these hospice staff specialize in dealing with the fears and anxieties that accompany approaching death. And you choose which sort of counseling you wish to accept. You always have the right to accept or refuse certain treatment plans, medications or counseling. You, (the patient and family as a unit) have control of your plan of care.

Choosing hospice is a positive step toward making the last days the most meaningful and comfortable for all. It means accessing the help you need, in a way which you govern, for your benefit. Because there are many hospices in each state, you may have questions about using a particular hospice in your area. Look in your local yellow pages and contact each of the listed hospices; speak with the representatives, learn how they differ, what services are offered, whether the patient can stay home with family to die or whether the hospice will only provide care in their facility. A full-service hospice will help you to stay home if that is your wish; the largest hospice is not always the best hospice.

Speak with others you know who have recently used the hospice services and ask them what they think of the hospice's services. A recent personal experience with a hospice is perhaps the best indicator of the type of care provided.

So, is hospice right for you? The answer depends on what you and your family want. Hospice offers many, many benefits, and hospice care is definitely a major improvement over going into the sterile environment of the acute care hospital to die. For most patients, hospice can help them to stay at home up to the very end. Good hospice care is a blessing to those patients and families in need. There may be some disadvantages (for some) to enrolling in a hospice program of care, and the drawbacks really depend on the type of home environment you wish to maintain at this time, or on whether or not the patient wishes to enter a facility. Some patients and families have difficulty in having different health care workers in the home and don't wish to give up the privacy of the home. Others feel coerced into placing their loved one in the hospice's facility, even though the patient wishes to die at home.

Really good hospice staff will try to be as unintrusive in the home as possible and respect wishes for privacy, but nevertheless, they are physically present. Is it worth it? Most hospice patients and families would probably answer "yes," especially when symptoms are severe and hospice expertise is needed to manage the symptoms and keep the patient comfortable. As far as faciliy placement is concerned, if the hospice does not attempt to manage the symptoms at home when the patient wishes to stay home to die, then the hospice is violating the standards of care which require "continuous nursing care" under the criteria of care. You must weigh the pros and cons for your situation and do what's right for you! Being informed of the standards of care and what services you're entitled to will go far in assuring that your hospice experience is the very best for all concerned. 2

1 See United States Code of Federal Regulations 42 CFR 418.22(b). For actual wording of this law see Section 7a of this text. The descriptions of what hospice is "supposed to" provide are based on the uniform standards set forth in the Code of Federal Regulations.

2 To see the standards of care, please refer to the Code of Federal Regulations cited in Section 7a of this text.

If you have questions about hospice, we hope that you will take the time to visit the hundreds of pages at our website, read our Guide to Hospice Care, visit our resources and links section (with hundreds of vital resources listed) .

Hospice Patients Alliance affirms that all human life is inherently valuable and that the role of hospice nurses, physicians and all other staff is to alleviate suffering and provide comfort for the sick and dying without sanctioning or assisting their suicide. A death with dignity allows for a natural death in its own time, while doing everything possible to assure relief from distressing symptoms. Hospice Patients Alliance works hard to promote quality hospice care throughout the USA. If you would like to support our mission, we hope you will consider supporting our mission through a donation. Hospice Patients Alliance is a 501(c)(3) charitable nonprofit corporation and your donations are deductible to the full extent allowed by law.

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