Information Needed to Make End of Life Decisions
By Dr. Timothy Domer, for the Times Herald-Record, April 13th 2011
"If I had known he was dying, I would have done things differently."
Dear readers,
These are the words of a widow of a man who had suffered a progressive illness and died only a few days after being admitted to a hospice program. She felt the medical system had let her down by not discussing the growing probability of his death and instead, giving her false hope.
This situation is not uncommon. I have been asked to write an ongoing column on medical care at the end of life. This subject may be uncomfortable, but it is of critical importance because, sooner or later, decisions impacting how we experience this part of life will have to be made.
Information and preparation for expectant mothers results in a higher likelihood of a happy birth experience and outcome at the beginning of life. So, too, preparation and knowledge regarding options and choices when facing advancing serious illness increases the likelihood that we retain control over the experiences during the last part of life. Studies have shown that what people fear most about the process of dying is loss of control, isolation and suffering needlessly. All of these can be greatly reduced through advanced planning and increased patient knowledge.
Life expectancies rising
Medical knowledge and technology have grown rapidly in recent decades. Diseases that were once rapidly fatal are now often treated successfully. Some patients are cured. In many other cases, a person who would have died previously from the condition now lives for years with a chronic illness.
For many, the burden and suffering from the chronic illness is well controlled, and one can live a normal or near-normal life. In other cases, the individual lives with significant suffering. These patients may get caught in health-care systems that focus on the disease rather than on the person with the disease.
Fact: Everyone dies
Regardless of our current level of health or illness, sooner or later each of us will die. People say "death and taxes." Many people do not pay taxes. Everyone dies. The fields of palliative medicine and hospice care focus on this reality with the goal of providing patient-centred, interdisciplinary team care to patients and families facing this part of life.
Not 'giving up'
Studies are proving what people involved in providing palliative and hospice care have observed for years: Involvement of this kind of medical care improves quality of life, improves patient control in decision-making, reduces suffering and in many, if not most, cases actually prolongs life. No study has shown that it shortens life. It should not be viewed as "giving up."
Governments have already passed laws stating that if a patient does not say they do NOT want certain "life-prolonging" interventions, those interventions will be done to you. In other words, decisions have already been made on our behalf regarding end-of-life care. These decisions may not reflect our personal values. (Not sure if this is the case in the UK.)
Through knowledge and preparation, patients and families can regain control. We will discuss these interventions, the probable impact on suffering and quality of life, their actual ability to prolong life, and other options and alternatives.
