Have you indicated your end-of-life wishes to your family? Do you want to be kept alive by artificial means under any circumstance? If you are unable to interact with the world and the people around you, do you want to have a tube surgically placed through your belly into your stomach and be fed nourishment that you cannot taste or enjoy? Your specific beliefs and wishes are your own, and not to be judged by others. But legislators continue to make assumptions that all Americans would want life and create laws and procedures which make it difficult for individual choices.
Less than 25% of Americans have advance directives. The Living Will and the Healthcare Power of Attorney documents are the first step in making sure that your own wishes, and no one else’s, will prevail in such a circumstance. Those of us who have filed advance directives are also at risk, however, due to the sometimes vague language and the necessary interpretation of that language left up to the healthcare system.
Recently, my partner and I were asked to help a family with just such a problem. Their father, Richard, had suffered a stroke and was continuing to live after many months in what could be considered a “minimally conscious state.” Unlike a “persistent vegetative state” such as Terry Schiavo in Florida, is described as being; this gentleman possessed inconsistent but definite awareness of himself and his environment. He complained and swore at his caregivers as they bathed him, he recognized his daughters’ voices, and he attempted to communicate but was usually unintelligible. He was no longer able to swallow food without choking, so a feeding tube was placed early in his rehabilitation. He was unable to walk, bathe, or dress himself. He was unable to use a toilet. The daughters knew that their father would not want to live in a nursing home, unable to communicate and enjoy his independence. They knew because the family had discussed his wishes and signed the necessary documents recommended by their attorney just weeks before his final, devastating stroke. The daughters were struggling with the decision because it seemed cruel to “starve him to death.” They wanted professional input and objective guidance.
As usual, the first thing to do in this situation is to contact the physician and ask for a referral to a hospice program. It seemed clear to the family and myself that the gentleman was in a terminal condition due to the fact that his stroke had left him incapable of feeding himself or even of eating naturally. We hoped that hospice would assist in weaning him off of the feeding tube, attempting some pleasure feedings, and assist him to leave the world naturally.
Imagine our surprise when, first, the doctor refused to even make the referral. Living in a nursing home, my client was being seen by the medical director who had known Richard only since he had been admitted 6 months before. His own physician did not visit the nursing home residents but was willing to be consulted on the case. He was not contacted by the facility’s physician. My nurse partner, Marti, contacted the nursing home doctor to explain that it was the family’s wish to have a hospice consult. Hospice personnel would determine if the man met the criteria for admission to hospice services. With her persistence, the physician agreed and made the referral to the nursing home company’s own hospice program.
Marti and I both visited Richard several times during the above-described process. We found him to be angry and frustrated, at times. During one visit, Marti asked him several yes-or-no questions and he appeared to understand their meaning as his answers were consistent with the questions. She then asked him if he wanted to be kept alive by being fed through the tube in his stomach and he appeared to indicate that this was not his wish. He did so by shaking his head at the question and pulling at the tube coming out of his body. She calmed him and told him that we were all working to have the tube removed. He relaxed.
Much family counseling was going on as well. One daughter lived in Oregon, the other in upper Michigan. They expressed concern that their father might be angry at them for allowing him to have the surgical tube inserted to begin with. They also were afraid, again, to be the cause of his death by requesting the feeding stop. We assured them that the hospice personnel would educate them every step of the way and would ensure that their father experienced no suffering.
The day of the hospice consult, we were again surprised by the result. After discussing the case with the attending physician, and reviewing the advance directives provided by the family, the facility’s hospice declined to open a case. They determined that, because he could not speak for himself, and because he was not unconscious or in a permanently vegetative state, that he must have WANTED to remain alive with artificial means. They came to that conclusion by focusing on the paragraph in the Living Will that requires a person’s initials to ensure they are in agreement. The paragraph states:
“In addition, if I have marked the foregoing box and have placed my initials on the line adjacent to it, I authorize my attending physician to withhold, or in the event that treatment has already commenced, to withdraw, the provision of artificially or technologically supplied nutrition and hydration, if I am in a permanently unconscious state and if my attending physician and at least one other physician who has examined me determine, to a reasonable degree of medical certainty and in accordance with reasonable medical standards, that such nutrition or hydration will not or no longer will serve to provide comfort to me or alleviate my pain.”
Upon further inquiry, we were told by the attending physician that he would “refuse to create a terminal condition by removing the feeding tube.” The irony here is that, had the feeding tube never been placed, the client would have met the physician’s stated requirement that he be in a terminal condition.
The daughters were grief-stricken and began to verbalize concerns that included whether or not the facility’s policies were created to ensure that their beds remain filled by a private pay resident. Our solution to the problem enhanced that concern when we contacted a second hospice agency, un-affiliated with the nursing home’s parent company.
The second hospice facility, Odyssey Healthcare, asked to see the client’s advance directives; we faxed them immediately. The conversation that ensued between me and Odyssey’s spiritual consultant, Rev. Timothy, was enlightening.
Rev. Timothy pointed out that the paragraph in question, the one initialed by the patient, was several pages into the document. The primary purpose for this paragraph was to ensure that if one could not speak for themselves because of unconsciousness, the medical staff would still be allowed to invoke the wishes of the Living Will. The way that the nursing home staff interpreted it was to believe that UNLESS the person was unconscious, they would want to remain on life support no matter what. What they were ignoring was a paragraph much earlier in the document that states:
“In the event I am in a terminal condition, I do hereby declare and direct that my attending physician shall (emphasis added):
1. administer no life-sustaining treatment;
2. withdraw such treatment if such treatment has commenced; and
3. permit me to die naturally and provide me with only that care necessary to make me comfortable and to relieve my pain but not to postpone my death.”
Again, the nursing home medical and hospice staff was unwilling to concede that this particular client’s wishes were to die naturally, and so our solution to the situation was this:
We moved the client to another facility, engaging the services of the independent hospice program. The tube feeding reduction began, the daughters came to town, and he died very peacefully within only three days. Clearly, he did not “starve to death,” but was already in a process of leaving this world. Perhaps he would have expired at the former facility anyway, tube-feeding intact. Perhaps he would have lived another 10 years in that manner. No one will know for sure. What I am sure of, and what Mr. P’s daughters are sure of, is that Richard did not want to live any longer in his current state. With the intervention of hospice, he was allowed some “pleasure feeds” including having his mouth swabbed with coffee, instead of just moisture, as he loved his coffee.
The lessons of this story are:
- Discuss your wishes with your family so that everyone knows what they are
- Choose a surrogate decision-maker (Healthcare Power of Attorney)
who agrees to follow your Directives
- Write down your wishes with your attorney, and consider including a paragraph such as:
“In the event I suffer from an injury, disease or illness which renders me unable to make health care decisions on my own behalf, which leaves me unable to communicate with others meaningfully, and from which there is no reasonable
prospect of recovery to a cognitive and sentient life (even if my condition or illness is not deemed to be "terminal" and even if my death is not imminent), I direct that no medical treatments or procedures (except as provided in paragraph ‘X’ below for management of pain) be utilized in my care or, if begun, that they be discontinued.”
Most important:
Don’t take “No” for an answer when it comes to quality, personalized healthcare. Physicians and facilities are run by human beings who have their own opinions regarding how to implement care. We can’t help but be biased by our own morals and values when performing our duties as professionals. But it is a patient’s right to have his/her OWN morals and values protected and honored.
Advance Directives: formal and/or informal documents (Living Will, Healthcare Power of Attorney) and conversations with family and loved ones regarding one’s wishes for end-of-life care.
