With antiretrovirals and other treatments extending the lives of people living with AIDS, is hospice still important to our community? Judging from the recent experiences of a number of AIDS Survival Project friends, hospice continues to be an essential element in the continuum of AIDS services. And it has become a more flexible element than ever before, with some hospices including access to IV treatments and even antiretroviral therapy. As with any choice of medical care, a knowledgeable consumer can be more effective in securing the most individually appropriate hospice care. It is just as important to understand treatment options and limitations in hospice as it is in selecting antiretrovirals or any other medical regimen.
Hospice is a philosophy of care. It is an approach that emphasizes comfort on the physical, emotional and spiritual levels during the last part of life. As western medical care has become more specialized and fragmented, end-of-life care has become one of the specialties. Not very long ago most people were born at home and died at home. In the last half of the 20th century birth and death became more "medicalized" and increasingly took place in hospitals. The family doctor that attended births, deaths and everything in between disappeared and with him (sometimes her) went house calls and a practitioner for whom care of the dying was an accepted dimension of doctoring.
Advances in medical care also changed expectations. Doctors were expected to be able to diagnose any medical problem and prescribe the right drug(s) to cure it. Specialties evolved with the unintended consequence that a smaller percentage of physicians treat the "whole person." Hospitals have become institutions of very high technology, affording survival of diseases and traumas that once were fatal. Medical treatment of cancers and AIDS, in particular, have radically changed the prognosis associated with these diagnoses. As a result, many physicians are unfamiliar as well as uncomfortable with caring for the dying. Because hospice care is not offered in hospitals, which is where physicians train, most physicians receive very little formal instruction on how to provide the emotional and medical support that people at the end of their lives and their families need.
So what happens to people living with AIDS or certain types of cancer who elect not to receive available treatments due to side effects or spiritual beliefs or for whom no appropriate treatment exists? Too many people think that at this point there is no medical help available to them, but that does not need to be the case. Palliative or comfort care directed by physicians who are experts in pain management and symptom control can allow many people to live much more fully toward the end of their life. Hospice care in this country is medical care provided by a team of physicians, nurses, social workers and chaplains. Hospice acknowledges that the end of life is just as important and valuable as any other stage of our lives. The hospice team relates not only to their "patient," but to that person's support system as well since each family member and friend contribute to the patient's quality of life.
Eligibility for hospice care is usually based on Medicare guidelines even if Medicare does not cover a person. There are two primary criteria: (1) a physician needs to certify that a person has a prognosis of six months or less if their disease runs its natural course and (2) the patient has to want hospice services. Some doctors recommend particular hospice providers, but the client can actually select whatever provider they prefer. Financial concerns may determine that choice if the client's insurance company only allows payment to a particular hospice provider, but even then individuals can try to negotiate to get the specific services that they want from that provider. Both Medicaid and Medicare cover hospice care, as do some insurance companies. Unfortunately, some people never are able to obtain the hospice care they want because they are told their insurance doesn't cover it. In these cases or the situations where someone has no benefits at all, it's worth approaching the hospice of choice to discuss what financial arrangements could be made. Some hospices have foundations that enable people without benefits to receive care and some may be willing to make other arrangements. There is nothing to lose by asking!
Hospice care can be provided in a private home, a nursing home or in a residential hospice facility. Most people want to be in their own home, surrounded with all that's familiar to them, as they finish their life's journey, but that's not always possible. Sometimes homeless people need hospice care and sometimes people who have a home lack a caregiver who can provide enough assistance for them. These situations need not prevent people from receiving hospice services. The hospice team can meet with their client, assess their situation and using their resources and community resources devise a plan that will allow the person to receive good care in a supportive, safe environment. This may mean strategizing to create a plan with family members and friends to share the task of care giving in the sick person's home or helping that person to move in with family. It may mean moving to a nursing home and receiving hospice care there. Many hospices have a residential facility where their clients live for short periods of time for intensive symptom control or to provide respite services when caregivers need to travel or take a break. Again, it's important to realize that there is flexibility in the provision of end-of-life care and to make your needs known.
Some hospices are more limiting than others in terms of treatments that are covered in the fee for hospice service. While one hospice may require that their patients terminate all forms of curative treatments before accessing their services, others may cover the use of ARV's, IV treatments and radiation for "palliative" purposes. Some do not agree with the use of feeding tubes or TPN (nutrition provided by IV) in hospice. Some require that the patients they follow execute a Do Not Resuscitate (DNR) order, while others do not. Before signing on to a hospice's service, you have a right to have all your questions answered to your satisfaction.
The point of hospice is to be able to live life as fully as possible at every moment we have. Hospice care can be creative care -- especially with clients and caregivers that are empowered and involved. If you believe that hospice care may improve the quality of life for yourself or a loved one, investigate the option by talking to providers, physicians and people you know who have been involved with hospice care. Be particular, because as a dear friend fighting cancer has written, "even the longest life is not long enough." Hospice can assist in making the last stage of life rich, comfortable and gracious. Certainly, it should be no less.
For comments and feed back e-mail Mary Lynn Hemphill, L.M.S.W. firstname.lastname@example.org.