On Giants' Shoulders

Monday, May 12, 2008

End of Life Care

This is an issue that our family has had to face four times in the past 8 years. Today there is an article at Catholic Exchange that goes into detail about what the CDF has clarified about this issue. Thankfully, from my perspective anyway, I found that the way that we dealt with each of these situations was appropriate according to the current guidelines. I truly wish the guidelines had been out there 8 years ago when we had to face these issues the first time. I'm glad that the guidelines are there now. I'm glad that we had doctors who were willing to treat patients this way, even though in each case they also offered the more expedient route. Each case was unique, but in many ways in each case we were faced with similar decisions. We had good experiences with hospitals, caregivers, visiting nurses,Hospice, and doctors. We had bad experiences with hospitals, caregivers,visiting nurses, Hospice, and doctors.

Our bad experiences with Hospice made us reluctant to use their services ever again. I report this with some reluctance because I know that Hospice has been of tremendous help to some families. However, our experience was that Hospice was willing to withhold care at a point where this care actually would extend the life of the patient and would provide relief from discomfort as well. When we coupled that with the willingness of physicians to suggest withholding IV fluids and feeding we became pretty convinced that there seems to come a point at which the medical community stops being as concerned about their primary patient and starts focusing their concern on the family. It seems to take a pretty determined family to get the focus back on the patient and provide the care needed to ensure that life is not ended prematurely.

These issues don't generally have to be considered until your parents are aged, and the first time you are confronted by them you may find yourself less knowledgeable than you should be. There is, however, no guarantee that you won't have to confront them earlier and in a crisis situation. This kind of crisis happened for my sister's family when she had a pulmonary embolism at age 51. She died less than a week later, but the family in that period had been faced with the question of removal of IV's, whether to continue with a ventilator etc. They were told at one point that she could remain in her current state for years. As it turned out, even with IV fluids, the ventilator, and medications her body began to fail. We were not being faced with a long term situation, but one in which she was at the end of life. She had IV fluids to the end and died peacefully in her sleep.

I would recommend this article to all serious Christians. I would also caution people that hospitals and doctors sometimes do things (like suggesting the withholding of fluids, refraining from using artificial feeding, and pushing pain meds) in large part for the family's "benefit" even if they don't know the family's wishes. When my husband's aunt was in the hospital a year ago the doctor was suggesting simply stopping feeding her. She was suffering from her third bout of pneumonia in a year and she had become less and less able to swallow. We ended up explaining our perspective in a written document and he had a feeding tube put in. Auntie lived for another 8 months, she clearly wasn't quite ready to die yet. When she did die, it was peacefully at home with a caregiver by her side. The visiting nurse who saw her the day before her death and who signed the death certificate saw us as an unusual family because we were willing to give the level of care we did. I think we saw it as only the care that we owed Auntie and the responsibility that we as Christians had for someone at the end of life. What we have discovered, however, is that you have to fight to provide this kind of care. The other kind of care is far more easily available. We may not have doctors who are actively killing their patients (although the use of morphine in some cases does raise questions in this respect), but there are a lot of doctors more than willing to convince families that withholding care is an appropriate course of action.

I honestly think that doctors are responding in part to families who do consider disabled people as simply a burden. I think they are looking at families and believe that they can provide relief to them when actually curing the patient is beyond their skill. I think that they don't see the value in the long patient hours spent by a bedside, not just in the life of the patient, but in the life of the family as well. I think they certainly don't appreciate the spiritual benefits that can be derived.

Because I would hate to see other families go into this process without being familiar with the guidelines, I am suggesting that everyone go to Catholic Exchange and read them. The article isn't one of the main ones, you'll have to scroll down to find it. However, I honestly believe it's important enough that you should take the few minutes it takes to read it and then save it for a time when you may actually be in need of the information.

1 Comments:

At 5:43 AM, Blogger mom v many said...

Hi Liz,
Yes, I'm afraid that we have lost a sense fellowship in the Catholic realm!
I'm up the road from you in St Albans. I'm in the phone book and easy to find. I'd love a chat and think we have quite a bit in common.
Hope to connect soon,
Diane

 

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