Since I have seen untold thousands of patients and their families in my eleven years as a hospice chaplain, I think it is a fair question people put to me at my talks when they ask, “What do the families you serve have most in common?” But for many years, I would say, and believe, that there were no real patterns. “Every case is unique,” I told them, wondering to myself why this was such a pressing question. I sensed that they did not like this answer. Was it the uncertainty it implied that bothered them? Did they want to know more about what to expect when the time to put a loved one on hospice arrives? Read on, and you will see that I will no longer leave you in the lurch.
I know that articles labeled “Top Ten” reasons, most popular diets, cities to live in, and so on can really grab a reader’s attention. Now it’s my turn to have such a list, even if not quite so long. That is because at long last I can discern the most common themes that families bring to my attention wittingly or unwittingly.
I’d say guilt gets top billing for what family members talk to me about when they are in spiritual distress over their loved one’s impending demise (and after). They feel they could have done something differently or did not do enough. This reminds me of a joke about what two different families did for their loved one. The Cohen family took their elderly mother to Florida so that she would not have to deal with the cold and could more fully enjoy her remaining years. She died soon after. The Levertov family kept their elderly mother in New Jersey so that she could enjoy her friends and community. She died too. The Cohens lamented, “If only we had not had Mom make that arduous trip and be torn from her familiar surroundings, she would have lived longer.” And what did the Levertovs say? “If only we had taken her from the harsh winters and had her make new friends to enjoy the balmy weather with she would have lived longer.” It is not easy to talk someone out of guilt, even with jokes like that. I try to provide relief by telling families that so many other families, who have done all they reasonably could, also feel guilty. Normalizing it like that gives them perspective and hints at the logic that if everyone feels guilty, then maybe no one is really all that guilty. Or at least,like misery, guilty people love finding out about company.
Nor does this guilt stuff stop here. Besides fretting about cheating the patient of how much time they should have left, they worry that if they are not present when the patient dies, they will feel guilty about not having been on hand for the final sendoff. Family members have to do other things, anything from leaving the room to taking a shower to boarding a plane in order to get back to jobs and childcare. And of course there’s plenty of guilt to go around for feeling the “forbidden” sentiments like relief or even delight when the person dies, because they were nasty stinkers. Or they feel that way because now a family can go ahead with making various plans and can see an end in sight for the financial drain. Hell, yes, money talks loudly at such times!
Second place for top spiritual concerns is uncertainty. How this torments families! So many ask me or the nurse how long their loved one is going to live. Unfortunately, this can be hard to predict. Sometimes I think a patient is going to die any moment and they live for several days more, or the opposite. I agree when people say the uncertainty hanging over them is worse than the death itself. There is also the uncertainty for the family concerning how they will cope after the death and what unexpected feelings may surface. The way I address this is to first of all acknowledge how nerve-racking and stressful and all round crappy uncertainty is. I then say that after the death, our hospice team will be available to guide them through the grief journey for an entire year. All hospices offer bereavement groups and one on one contact as well as literature about grieving. (My favorite grief book is How to Go on Living When Someone You Love Dies, by Dr. Therese Rando. It is so clear and almost entertaining in its style.)
On the positive side of spiritual concerns, top place goes to gratitude, excepting abuse cases of course. Even though the families are sad and usually angry about a good thing coming to an end, they are grateful for having had all the years they did have with their loved one. Their loved one enriched their lives through nourishing, encouraging, enjoying, and sharing love with them. Sometimes the gratitude is for whatever time is remaining, and sometimes as death occurs, for an end of suffering.
Rounding off my list of top four spiritual concerns is humility. Families realize how little control we ultimately have, and that we go through our lives at the mercy of innumerable factors. Some find comfort in believing that whatever happens throughout our lives including the timing of our death is all God’s Plan. More to the point, as the grand mystery of death itself extends its reach, rolling out its carpet of eternity, we stand humbly at its fringes.
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