Back during graduate school, when I was an overachiever, trying to work and put myself through school and figure out what part of social work I wanted to work in, I volunteered with hospice. I didn’t know a lot about it, but I knew that they tried to address the needs of the whole person; physically, mentally, spiritually. I don’t recall how long I volunteered, I believe it was about a year and half, but I do remember that I was shocked by how many of my patients were “discharged” from hospice. One gentleman had a diagnosis of chronic heart failure and was in a nursing home, until he was discharged. We would play chess weekly or every other week and chat a little. He went home without hospice. Mostly, I read to the ladies while they rested in their beds and if they needed something I made sure they got it.
It wasn’t about dying; it was about living. To be on hospice of course, the doctors have to think you could die within six months and you can not receive curative treatment, though using palliative care for pain and comfort is allowed. (A misconception is that palliative care always equals hospice and this is not true.) Again, doctors aren’t all knowing, and though some of us working around death can tell when the end is near, six months is just a best guess. It could be more or less.
But the length of time isn’t the priority. The priority is the living. The services are provided in the person’s home wherever that home is. And the care plan is set up so that all of the needs of the person are met. This includes pieces of medicine that are not often a regular part of health care. Things like volunteer visitors to give the family respite or just provide another familiar face. There are clergy or spiritual counselors who address the emotional and spiritual needs of the person. The doctors, nurses and staff are trained to make the patient as comfortable as possible. Not by knocking them out and making them unresponsive, but making them comfortable, so they can interact with family and friends as they feel up to it. And finally, bereavement and counseling is available for the family and it remains available for a year following the death of the loved one. Most insurances cover hospice in some form or another. Including Medicare and Medicaid.
I didn’t end up working in hospice. Mostly the job wasn’t ready when I was. Who knows, I may end up there one day in some form or another. But I bring this up because it’s such a wonderful resource and yet it produces such fear in families they often don’t look into it when it could be most helpful. I understand, death is scary but it’s also scary to withhold information from yourself or your family. If you need that information there are some good resources on-line. The National Institutes of Health and the National Institute on Aging have links on their website if you type in hospice and some informative publications if you type in end-of-life care. http://www.nia.nih.gov/health/topics/end-life
Christine Bitzer, LICSW, is the Assistant Director of Seabury Resources for Aging’s Care Management service. Care managers work with older adults on an individual basis to advise them on a variety of issues and services; such as home care, transportation, medical/legal assistance and housing. Families are put at ease having a knowledgeable guide to provide recommendations and resources to meet their unique needs. This expertise can save families money and reduce stress and time away from work. Christine can be reached at (202) 364-0020 or email her at CBitzer@seaburyresources.org