We are approaching end-of-life care differently than in the past. We are withdrawing care. We are letting go. I would like to know if we nurses are ever troubled by the direction this is taking. I am inviting comment on this subject. Are you being asked to participate in care you find disturbing? Do you think we should do more? What is the practice at your facility?
Nov 16, '98
I think because of technology, people live longer. However, the quality of life is the driving force in withdrawing support.I have not participated in extubating patients on the ventilator. Usually the MDs do that part.This is done after family conference and after determaining there is no quality of life left for the patients even if they survive. I think with increasing cost of care, this is an issue that will continue to stay.
Jan 14, '99
Palliative care is an important issue and when care is being withdrawn and ethical approach needs to be taken. We have the means to prolong life but that does not always improve quality of life in fact often the opposite happens.
I work in Aged Care and the decisions I have found disturbing were not withdrawing care but actually being aggressive despite the fact that the body was shutting down naturally. The person in question was in her seventies with end stage dementia with no communication or recognition of anything. Her body slowly gave up. She had swallowing difficulties and even her appetite was poor. An assessment was down as people were frightened she would aspirate. The GP was notified and decided to put in a NG tube followed by a gastrostomy tube. The family were informed by telephone of this decision yet no case conference was held to determine what was in the patient's best interest. BAsically if left to her own devices and with full palliative care she may have only lived another month. With invasive therapy it was another six-eight months, in that time she still was choking as she could not swallow her own saliva,. She often had a startled frightened look especially when suctioned which created more saliva.Family visited rarely ( husband had died earlier of cancer)
and she started having gastro-intestinal bleeds about one-two months before she died.
when she finally died it was from a massive bleed. It was almost as if she had rotted away internally.It was a very traumatic time for all because this decision was not based on ethics or even in the best interest of the resident. We certainly can extend life, not indefinitely but for some time but at what cost ( and Ido not mean economic cost)to the patient and the family?
By the way before the decision was made to treat her invasively I had attended an Ethics Seminar given by a well known nurse ethicist who happened to be a nun.
I recall her saying that family, friends and even nurses like to see the patients eat as it means they will be alright. If a patient stops eating we hover and push foods instead of facing the fact the person is dying. She also said that when a person stops eating that person goes into a euphoric state and feels no hunger pain and is quite comfortable.Had palliative care been given tha family and most importantly the patient may have suffered less.
Jan 14, '99
The story you told sounds familiar yet from a different perspective than what I witnessed
as a daughter and granddaughter and as well as a nurse.
In 1991 both my grandmother and mother where placed in different nursing homes with
multiple problems. The health care problems were due to medical and nursing error that
resulted in both becoming too debilitated to be kept at home.
In 1992 my grandmother developed mental status changes attributed to a small stroke
while I was on a disaster assignment on the opposite coast. By the time my aunt had seen
her mother and relayed messages between me and her health care team she had begun to
die. The cause of death was DIC from Urosepsis. This was the second time in this
facility she had had Urosepsis and the fifth time in last 6 years. The only signs and
symptoms my grandmother ever had with bladder infections or Urosepsis were mental
status changes. Up until the last episode she was alert, oriented and active. Her
complaints were ignored by the nurses for days until a nurse who knew my grandmother
better contacted the doctor and myself directly.
After my grandmother's death I had a conference call with the health care team and
explained my concern and my mother's concern that Urosepsis would be missed in my
mother due to the presenting symptoms. My mother was on various tube feedings for
decreased swallowing and expressive aphasia due to seizure activity from an administration of an over dosage of IV aminophyllin and the physician not evaluating
levels for over 6 weeks while in ICU after and MVA.
As I was moving to relocate to the area where my mother was living, I was contacted by the LTC that her condition had deteriorated. "Your mother's stomach tore during replacement of the PEG. She has continued to bleed and we believe she is in DIC. She has been transferred to -----."
When I asked what her condition was before the incident.
"Well as you know she wasn't doing well her mental status has decreased and we believe
she has had a small stroke."
So what was her temperature.? "98", RECTALLY? "uh, Yes."
For how long ? "Two Weeks"
When I asked if they still have the notes from the conference call about how Urosepsis
expresses it self in my family, they did but no one had read them apparently. I did inform them that I considered antibiotics, hydration and feeding palliative care.
When I arrived my mother was on none of the above and subsequently died three days
later. The last thing she said to me was to beg for a drink of water. While giving her that drink a nurse had the audacity to come into the room and chew me out for giving her that drink.
Then the doctor wanted to put cardiovascular failure down as the cause of death. The
doctor and I negotiated that the cause of death on the certificate would be DIC, Urosepsis and complications from diabetes.
I do have a living will and I do believe that there are situations were life support should not be continued. Unfortunately what I believe is palliative I see rationed at times in adults.
My poor PMD has a very long living will to contend with on my chart but we do review it
every year. I have multiple pages describing what periods of time have passed before determioning irreversible brain death; and what I consider palliative care.
Jan 14, '99
Sounds like you have MULTIPLE reasons for legal action in both your mother and grandmother's case! Have you considered this option? Maybe then, they won't be so cavelier about following family's wishes in the future!
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