Turkey, Sweet Potatoes, and Living Wills

I just try my best, as the only remotely medical/health professional in the extended family, to “get out the word” on Living wills, the new stricter HIPAA laws, the benefits and rationale of Hospice and so on. My husband, aged mother and myself all had Living wills drawn up by a Lawyer at the time we re-did our wills a few years ago.
A close family member went through the worst possible kind of non-patient/non-family centered end of life care when her husband (in his early 60’s) passed out or had a stroke at his brother’s. No one there knew CPR. It was said later he was without oxygen for perhaps 10 min. He was on a vent at the local hospital, and for my relative, his wife (who has no more than a high school education though she is a very bright woman) the situation was a nightmare. She and I emailed numerous times a day. I was not in a position to go up there, to another state, so I tried my poor best and tried to be tactful….but nevertheless the “team” of doctors treating him prolonged the event to over three months. She agreed–was talked into– to a tracheostomy, under the impression given her BY the doctors, that he would then be able to talk to her; she ok’d a feeding tube, afraid he was hungry and thirsty, and so on.
The group of doctors would NOT speak to her or meet with her and other family members at all….they gave her platitudes, and no realistic view of the big picture so that she could prepare herself, and kept on suggesting interventions that—for me in another state—sounded like they were only interested in keeping him “alive” so that they
could do these interventions which were, I felt, for monetary benefit to them and the hospital, and not for the benefit of the patient and his wife.
I did not want to entirely pull hope away from her-
-especially since I was NOT there to really know what was going on other than by her e-mails—but I tried subtly to let her know the outcome looked grim, though “we never know”….Finally he was released from the hospital and sent via ambulance to a specialized Nursing Home for vent patients…and FINALLY my relative reached the point where she could ask to have the breathing tube removed. She did that, and sat with her sister the four hours it took him to pass away (they were, of course, still hoping for the miracle.)
I felt, and feel, strongly it was one of the worst cases I’ve heard in terms of the fact that no matter what she asked the MD team in the hospital: asking to meet with them, asking for more information, she was essentially ignored and bypassed. I had encouraged her to contact the hospital administrators or see if there was a hospital social worker who could help her get some answers, but like many non-medically educated people, I think she felt any “rocking of the boat” would rebound on her husband, the patient.

AARP.org has a very very good series on terminal illess or beyond that, simply, as they call it, “Start the conversation”. They cover living wills, cover Hospice use in depth, discuss how, for the close-to-death patient food is not digested and not really needed, and may make him/her feel worse, and that though they may be thirsty (and letting them suck on a wet sponge made for the purpose, if they are able, is best for that.) They discuss dealing with the very ill/ terminally ill at home, hospice/visiting nurses and really almost everything I think a layperson could want to know.

Another brief story—my late mother in law had been through her husband’s miserable death from metastatic colon CA. She’d seen first hand the effects of chemotherapy and so on. When she herself was diagnosed with inoperable cancer she CHOSE to refuse radiation/chemo, and in fact wanted Hospice help from the first, which she did receive. She moved in with a daughter, and lived about three months but comfortably, with her pain and nausea controlled and her family visiting or staying close. She died with her three daughters with her that night and her favorite music on CD. The great work the hospice nurses did, their availability at all hours, their willingness to take HER word for it when she needed more or a different pain medication, was outstanding.

I can only say that the AARP series of articles is one worth printing out for any layperson or their family dealing with a terminal situation; or just to educate them if this ever occurs.

I am not so sure about bringing the topic up at Thanksgiving, for example in my family little children and older children are there, and the men are entirely focused on football that day! I do agree that every RN has a responsibility to answer questions truthfully but without destroying hope; and that within our own families we can be the leaders in terms of educating people who probably have little or no idea how all of this “works”, what hospice “is”, what to expect, and so on.