Ironically, one of my comments on last week’s post,”An Uncompleted Story (Not This One)” dated July 10, stated that the post itself was incomplete too. Certainly any story can potentially go on further, but I take the comment as high praise meaning he couldn’t wait to read more about Jenny.
One of the loose ends about Jenny was that she had been at best a borderline case for hospice care for quite awhile. Such people can be put on hospice because hospices want to have as many patients as possible. Ultimately she admitted to me that she just wanted to be on the program in order to get some free hours of help with bathing and dressing by the home health aide. I did not know this for many months. In the meantime I was puzzled that visit after visit, I did not see signs of decline such as loss of appetite or changes in her ability to move around in bed. At one point I even showed her how to do some yoga designed for the bed-bound. (By the way there are chair-bound yoga moves too.)
Once Jenny finally told me the truth about getting put on hospice prematurely, I felt defrauded. She was seeing me under false pretenses. A chaplain is there not just to provide companionship, but to provide a safe place for patients and families to express their concerns as they cope with the impending crisis of death. I felt like a firefighter who had put on all her heavy equipment and driven over with alarms clanging for miles around only to find there was no fire. Once again, loose ends remain in this post. Perhaps this will be true for all my posts, given the nature of this topic. That, too, is ironic, as we think of death as final, as the ultimate closure. _Karen B. Kaplan
offbeatcompassion 
In our bedside singing, we are familiar with the hospice/no-hospice routine, although I don’t think we’ve ever encountered somebody who put herself on it falsely. We have sometimes started singing at somebody’s bedside at the request of hospice, then to be told a few weeks later that they are “off hospice”. We continue to sing and are glad we do, as it continues to bring comfort. Usually they experience a sudden decline and die, and we are glad to have been part of the process. But then we are volunteers, not a staff person who must manage priorities.
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Dear Cathy, When a person is legitimately on hospice (which is most of the time), and subsequently comes off, although one might think the patient and family would be happy about the news, it is often perplexing and confusing to them. In any event, your singing improves their quality of life no matter what happens. -Karen
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I can relate to Jenny, Karen. I too considered going on hospice because it would be better for us financially. After thinking it over I decided against it. I am thankful that hospice is there for those who need it, like my father-in-law who passed away two months ago; hospice was great to him in the days leading up to his death.
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Thank you so much for writing on this sensitive issue. Just to be clear to everyone out there, when hospice care is appropriate, one of the many benefits is financial. Not only that, a social worker on the hospice team can often help out with some of the basic financial decisions families are facing on top of everything else.
I see from your blog that you are very religious, so I know it would make sense to you for me to say, May God continue to be an uplifting and constant Presence in your life.
Very sorry to hear of your father-in-law’s passing.
Sincerely, Karen
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Thank you, Karen!
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I have had 2 similar situations. On the first…,,At the time, .I too felt duped. However, In between the first and what was to be the second, i had time to think about the situation.
I came to review the facts in a different light. In other scenarios, visiting with someone at home who needs further assistance but cannot afford it and is struggling without it. li- it is heartbreaking listening to their plaintiff lament that they are in need…and there is no A relatively young patient in a nursing—denied further PT because it has been determined that her condition is now stable…ignoring the fact that her illness might very well return next week..and that she will be less fit to ward it off—weighs heavily on her mind.
Since the degree of care our patience receive…or don’t receive…. impacts their very day to day life….I came to my own level of comfort that I am there to bring whatever comfort I can to a sick person…..a troubled person, or someone who just needs help. I have just made a personal decision – to only concern myself with my relation to them…and not even want to know the details of their legitimacy on hospice. Since we are bound to run into this…each of us have to find our own comfort level with the situation.
Laurie Dinerstein-Kurs
Chaplain
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Laurie, you adroitly bring up the complexities of needing care and the lack of avenues towards getting affordable care. I try my best no matter what the circumstances to offer the most comprehensive spiritual care, but in this case, there was a “spiritual pretense” too as it were. She was pretending to me to be concerned with her upcoming death because she was afraid that I would discontinue the visits if she did not follow an “expected” script. She really wanted the visits because she felt lonely. Of course the visits were valuable to her, but she had put on an act when she could have been her genuine self, and thus better served. She did reveal herself finally, and authentic and more intimate communication ensued. _Karen
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Karen, there sure are infinite layers of complexity to what goes on for people facing the need for care and feel they need to continue a hoax in order to get it. I can only imagine the fear and guilt that must pervade the patient who believes the only way to achieve their desired goal – is to falsify responses and actions. Actually, I think that is quite sad. For sure, when one finally feels comfortable enough to allow themselves to be open and honest..a much better dialogue can ensue. Yasher Koach for all you did!! (and continue to do!!) 🙂
Laurie
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