Compassionate Care For Your Parent Or Spouse
By Markate Daly

Markate Daly, PhD, longtime OPEN EXCHANGE lister, offers Philosophical Counseling. Markate's approach is rational, not metaphysical, helping individuals make decisions based on their own values and priorities.

Many people find themselves with the responsibility for an aged parent, a helpless spouse, or a dependent sibling. This is not new. Extended families have traditionally taken care of their own elderly and sick members. However, in modern America we no longer live in extended families with a surplus of women's labor; we are in the process of inventing a system to replace this traditional care scenario. And medical advances have dramatically altered the course of physical decline, creating new challenges in the process.

Much in these social and medical changes is very good. Women enjoy an increase in occupational opportunities; the elderly have more freedom and independence; children are free to study and develop their talents. And nearly everyone has benefited from better health care, especially those with chronic conditions. Modern medicine has kept many people functional and with a good quality of life far longer than was previously possible.

The down side of these changes is equally new. Medical advances have extended the length of the decline when it does come, and have created a complex set of treatment options that call for agonizing decisions. What used to be decided by "God's will" or "nature taking her course" must now be decided by family members. Doctors used to guide these decisions. But now they make a diagnosis, offer a reasonable prognosis, and suggest options for treatment. Then the family has the responsibility of choosing the most appropriate option. Any difference of opinion within the family compounds the stress of this situation.

If the crucial decision to be made is choosing a care scenario, the social infrastructure to handle that burden has largely disappeared. However, the affectionate ties and the feelings of obligation remain as strong as ever The desire to do everything possible for our father with Alzheimer's or your wife who suffered a stroke or my brother, who has Schizophrenia, is as strong as ever. Ideally we still want to provide home care by loving family members. But often the only viable options are institutional care or hiring day labor. And how do you factor in the decline in quality of life for the caregivers without feeling heartlessly selfish?

If the decision that must be made is a treatment option, selecting the most appropriate one can be even more distressing. How do you decide how aggressively to treat, how much misery your loved one can be expected to bear, and for how much quality or quantity of life? And how do you balance what can be gained with what is lost by the patient and those who provide the subsequent care. All of these issues have an ethical aspect.

Without the guidance of either tradition or authority, an individual who shoulders this responsibility can be plagued with guilt at not having done enough and resentment at having to suffer the guilt. If the decision that must be made is for a treatment option, the moral burden is very great. Choosing anything less than the most aggressive treatment can produce intolerable guilt. So, even if the benefits are minimal or non-existent and the cost in terms of suffering and expense are great, there is an almost primal urge to choose this option.

So how do you make an intelligent and compassionate choice for a family member amidst such uncertainty and emotional turmoil? No one really knows how we make decisions in general. Even when we think we are just following a rule, we have to choose which rule to follow. Is it best to preserve human life, to conserve personal integrity, to balance the well-being of all parties to achieve the greatest good, to follow the precepts of religious teaching, to decide in the interests of the party with the most to lose, to just take responsibility and act, to follow the consensus of a deliberative group, or to cede the decision making authority to someone else?

I believe that the best decisions are made by looking at a problem through the perspective of many different worldviews. If you examine a situation from different conceptual frameworks and in different moral languages, a resolution will often emerge. From some deep place in the unconscious mind a right or good course of action presents itself. Or, in the case of a tragic choice, one option will appear to be the least bad.

A problem can appear to be intractable, mainly because we are locked into using a single conceptual system. The very act of changing mindsets and looking at the situation from an entirely new perspective is liberating and creative. It unblocks the decision-making process through creative ferment.

CASE ONE
At age 78 Delia was having trouble managing her affairs independently. She was loved and treasured by her family, so when the trouble started Sharon and Rick, her son, were glad to bring her into their home. Their three school-age children were also excited at the prospect of having Grandma there. But as her dementia gradually became apparent, Delia needed constant monitoring and her personality was changing. Since Sharon and Rick both worked full-time, care personnel were hired and the kids took turns Grandma sitting. But the stress on their marriage was showing and the kids wanted to be any place but home. The doctor's prognosis was a gradual decline over a 5-10 year period.

The guiding ethic in this case has been one of love and care and, from that perspective Sharon and Rick were doing exactly the right thing. But a perspective of individual rights gave a different view. The disintegration of their marriage threatened their basic personal rights. And from the perspective of responsibility, losing control over their children's development was not something they would choose to do. To secure the well-being of all the family Sharon and Rick chose to place Delia in a care facility close to their home.

CASE TWO
Peter, age 84, suffered a massive stroke while in the hospital for something else. He and his wife had agreed to refuse treatment for each other to facilitate a quick and dignified death. But his power of attorney remained with his daughter, Doris, who thought that it was best to let treatment proceed. For their part, the medical staff thought they must treat unless the family refused. Peter couldn't speak and his wife had no power to stop the life-saving procedures that would doom him to years in a nursing home.

Doris believed that life is holy and should be preserved and that she should obey the doctors, who were proceeding with treatment. In this case Peter's grandchildren intervened. They argued that Grandpa wouldn't want this; that Grandpa had the right to decide for himself and his views on this subject were very well known. In ethical terms Peter's integrity and right to decide was the highest moral value. Doris relented and allowed his life support tubes to be removed.