Hospice Care—Living While Dying

elderly home care service, help for senior caregivers, home care companies, home care in Minnesota, home care services for seniors, home help for the elderly, in home care Minneapolis, in home care Eden Prairie, in home care St. PaulWhat is hospice care?

Hospice, rather than a place, is a care model that can be used at home, in a hospital or nursing home setting, or in a special residential home specifically for those on hospice.  Typically, people become eligible for a hospice program when they can no longer be cured or they do not wish to be cured of their physical disease.  They also need to meet certain specific medical criteria, and by their physician’s best educated guess, they must be within 6 months of death.

Most often people choose hospice for pain and symptom management.  Hospice utilizes a team approach consisting not only of nurses but also of clergy, social workers, music and massage therapists, and home health aides.  The approach is a holistic one that addresses the physical needs of the patient, as well as their emotional, psychological, and spiritual needs and those of their loved ones.

I heard on the news over this past weekend that a prominent politician, George McGovern, passed away.  I believe he had been admitted into a hospice program and died just two days later.  I hear this same story so often—the decision is finally made to accept hospice care and the family completes all of the time-consuming paperwork and interviews to get the program started, and then the person dies within a day or two of entering the program.  How sad!

While I’m not exactly sure why families don’t access the hospice program and its benefits sooner, I have a couple of ideas.  First of all, many physicians have little or no formal training in end of life issues. Therefore many doctors feel uncomfortable telling a patient and his or her family that there is nothing more that can be done.  Since doctors are trained to cure, many have difficulty stopping treatment and admitting their perceived failure, even though the prognosis is poor and death is inevitable.  It’s also very difficult for doctors to talk about end of life until they are absolutely sure the person is going to die and that death is fairly imminent.

Secondly, we don’t initiate talking about our own end of life issues with our doctors.  We wait for them to bring it up, and they wait for us to bring it up.  The topic is uncomfortable.

Another reason people get admitted to hospice later rather than sooner is because they and their families may be in denial about the impending prognosis of not ever getting better.  Coming to terms with the fact that a cherished love one is dying is not an easy task; it’s a process.  Acceptance comes with time and not all family members are on the same timeline.  Some people don’t like to talk about it, as if not talking will change the outcome.  Also, some people don’t know how to express the deep feelings of sadness that comes with loss.  Others are private about these matters.

There are misconceptions of hospice that prevent families from utilizing it sooner.  People can be admitted to hospice as early as six months before they die.  They can also “graduate” from hospice if they don’t die in that time period.  The important thing to remember is that, whether or not the patient dies in the initial six months, being on hospice gives much physical, emotional, psychological, and spiritual support to prepare for death.  Just as importantly, the program assists both the patient and the family in learning how to “live while dying” and to address any unfinished business so that the person dying can be at peace.  Once people and their families make peace and say what needs to be said, it becomes easier for them to “let go.”  Hospice team members can encourage and facilitate these difficult discussions.

Although the benefits of the hospice program include pain management and keeping the client comfortable, the program operates from more than a medical model.  While the physical management of pain and disease is important, I believe that the psychosocial and spiritual needs are just as important.  Whether a person dies while on hospice or graduates, hospice addresses and provides comfort on multiple levels.

Often the idea of hospice needs to be presented a few times before the family will be ready to accept it.  It’s also helpful if the hospice message comes from multiple sources.  For example, it could come not just from the doctor but also from other medical professionals involved, a social worker or clergy person, or a family member who is further along in the process of acceptance than the rest of the family.  It should be noted that a physician’s order is needed to admit someone into a hospice program.

According to a pamphlet published by Hospice of the Twin Cities, hospice care:

1)      Affirms life and regards dying as a normal process,

2)      Neither hastens nor postpones death.

3)      Provides relief from pain and other distressing symptoms.

4)      Integrates the psychological and spiritual aspects of patient care.

5)      Offers a support system to help the family cope during the patient’s illness and in their own bereavement.

The bottom line is that hospice care is a specialized and special form of treatment for those dying and for their families.  It can involve care in the home or elsewhere.  The utmost benefits of the program are obtained when a family and their beloved dying relative sign on to the program as soon as they are eligible.

Julie Ellingson, LSW

October 26, 2012

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