A recent hospital conversation with several nurses over the use or abuse of feeding tubes in demented patients has rekindled my focus on the topic of ‘end of life’ matters.
Several years ago I participated in a conference on establishing a Palliative Care Committe at JFK Medical Center in Edison NJ. The need for such a committee is beyond doubt. The committee’s function is to advise and consult on hosptialized patients who are terminally ill and yet who still undergo extensive medical testing as well as procedures which will do nothing to ensure their survival. In fact, I believe, such testing and procedures actually induce suffering in these individuals who are rapidly and irrevocably approaching death.
The topic extends to the deeper discussion of death and dying. It is one which is extremely controversial with multiple opinions voiced from all corners of the religious, scientific and spiritual realms. On an individual basis, families grapple with heart-rending decisions about when to allow a ‘DNR [do not rescussitate order] or whether to allow feeding tubes to be inserted in their loved ones only to prolong an existence without real substance.
We are not talking about euthanasia here. Dr Jack Kevorkian need not be the topic of discussion. No one needs to actively hasten the death of any human being. But we must, on a societal level, begin a serious and earnest discussion of how to deal with the dying.
This is a topic which is truly metaphysical in nature. It forces all of us to confront our beliefs on life, death, dying and what happens after death. It forces us to come to terms with the inevitability of death, an issue for which many in our culture are in complete denial.
Problems arise on a practical level when patients arrive to a hospital without any ‘advanced directive’ representing their personal wishes regarding end of life procedures. Even worse, however, family members often disregard the advanced directives and impose their wishes on their relatives who are incapacitated and unable to direct their own future.
Within families, there can be disagreements on how to handle their dying relative. Some will insist that ‘everything’ be done, regardless of whether is is reasonable, will prolong their relative’s survival, or will induced suffering in them.
Some may point to religious reasons for insisting that no tests or therapies be witheld. Others may be reflecting their own deep fears of losing a loved-one regardless of their condition. When dealing with families in distress over such issues I will often ask them to disregard their own feelings about losing their loved one and try to do what is best for them at this delicate and crucial time in their life.
Those families with a belief in a soul and its survival after physical death, should tap into that belief at these times. They should be encouraged to discuss their beliefs, fears and re-focus on their loved-ones and what is in their best interest.
It is not irrelevant or crass to point out that a huge amount of health-care dollars are spent on terminal patients whose length and quality of life are not advanced or enhanced by these activities. I will state my opinion that this ‘waste’ in limited financial resources would be better served in promoting the health care of younger, more viable individuals who presently are not receiving health care at all.
This is not a harsh or unfeeling statement. When my own Mother was in the process of dying last summer, my family agreed to allow her to pass away at home, without an iv or with a feeding tube. She passed peacefully and serenely in her sleep and I will never regret the decision not to hospitalize her or have a feeding tube inserted.
This topic is so important that it deserves to be front and center in the consciousness of all Americans and be offered for public debate. All forms of media, Oprah included, should be exposing the issue for what it is–engrossed in the issue of life and death itself.
These are issues that must be discussed openly on an individual family level and on a national level. There may not be one correct or unanimous decision. But until it is raised, it will continue to be painfully and poorly experienced by one and all.