Unit 13 -- Making Decisions in a Family Context

Grief in a Family Context --HPER F460/F560

Goals for this Unit

This unit will address the issue of choice and how it relates to loss. Among the topics considered are choices about medical treatment, ranging from the level of treatment through to the decision about whether or not to accept or reject any treatment at all.

Preliminaries

Before we begin this unit, I would like you to think about some of the (often uncomfortable, even painful) choices we may need to make as we face and experience loss. We will only consider a few of the more major ones in this unit, but there are others that can arise. Think back to the losses we have discussed in the class and consider how the decisions made by family members affected the grief within the family.

Many of the readings from the Web are highly opinionated (with a strong emotional content behind them). You may recognize some as being "agenda" biased. I would like you to read them with the following in mind: the goal of exposing yourself to ideas with which you might disagree as well as those with which you agree.

This unit is organized in this way: Following an introduction, the "lecture" presents the stories of three families in which decision making is of concern. At issue may be the idea of flawed decision making, or the question of whether the "right" decision was (or can be) arrived at. Next, you are asked to go to the various Web links listed in the Readings section, below, to collect information about a variety of options that may be used in the decision making process.

As we did once before in the semester, rather than waiting until the end of this unit, you will be asked to consider the various points that are raised throughout the lecture, as you read the lecture. The lecture serves as a guide to the readings rather than an expansion on them and, as such, it will be the discussion we have in class that builds on the readings. Answer both required questions at any time during the week. We will also have a guest to the class this week and our discussion will be organized the same way we organized the discussion with Stella earlier in the course. Finally, at the end of the week, post at least one conclusion you would draw from our discussion. Post your responses in the Whole Class Discussion on Oncourse. I look forward to your responses.

Readings

Anthology

Web Resources

"Lecture"

Decision making is difficult to accomplish in an emotionally loaded situation and I can not think of many situations that are as emotionally loaded as death, either one's own or the death of a loved one. As we've discussed several times during this semester, with the loss of death, there are multiple losses, and this provides a "layered" feel to the loss experience. While one issue is being dealt with, others are coming up. In addition, there are multiple players in the decision making process, as is demonstrated in your reading by Winslade and Ross. At the same time, as the Kirschbaum article demonstrates, family members have multiple issues which with they are dealing as they make their decisions.

Another point the chapter by Winslade and Ross and the reading by Kirschbaum demonstrate is the importance of being as educated as possible about the situation (in the case of the reading, the medical setting). At their most vulnerable, one must be at his or her most aware. As the authors state "Patients have rights (both legal and moral ones), but in order to exercise those rights, patients must know the strengths, weaknesses, and structure of the health care system and how the patient fits into the system." The same is true for family members, who may need to carry out some of the tasks that the patient is unable or unwilling to do. Differing goals, the lack of a common vocabulary and understanding of the situation, and miscommunication (or perhaps "missed communication") contributes to suspicion and mistrust. This, then, adds to the grief of the situation.

The Lingering Effects of Decision Making

Consider the impact on the families and family members in the following scenarios. Think about who should be making decisions, how they should be made, and what, if anything, you would have changed in these situation:

The Gileabards

Mrs. Gileabard, an elderly woman, a smoker with a history of heart problems, is admitted to her local (rural and isolated, providing very basic care) hospital, with severe, crushing chest pains. Her husband suspects a heart attack. It is determined that she is, indeed, having a heart attack. She is separated from her husband (who also has medical problems), taken to the intensive care unit of the hospital. Her husband must fill out paperwork before he is allowed to be with his wife of over 50 years. When he finally is able to join her, she has been changed into a hospital gown, which she attempts repeatedly to remove, overwhelmed by the pain she is suffering. When he asks about pain medication, he is told they can not give her any because "it will depress her breathing and she will die." Given the level of care available at the hospital, it is clear that this will be the inevitable result of this heart attack.

Mr. Gileabard feels powerless to protect, comfort, or calm his wife and periodically, he is asked to leave the room so she can be examined. Although his wife signed a living will, he has not brought it with him and is fearful about leaving her to drive home (a 30 minute drive) to get the living will. He fears that she will die while he is gone. In addition, he has a medical condition that impairs his ability to drive. Through the course of the several hours, he continues to ask for pain medication for his wife and, each time is told this is not an option. As a result, he watches his wife as her heart is slowly destroyed over the course of several hours. Finally, her heart arrests and he is rushed out of the room as the "crash cart" team races in and attempts to start her heart again. Fortunately, they are unsuccessful, but this man, who now wishes only that his wife will be safely dead and away from the medical team, must listen as they attempt to "bring her back."

The Waterson

After a somewhat difficult second pregnancy, Judy Waterson gives birth to a baby girl with profound physical anomalies. She and her husband, Dave, are shocked and horrified at the baby's condition (many of the anomalies are obvious; others will become known only after medical tests). They name her Denise are initially so fearful for her life that Dave baptizes her with water from Judy's drinking glass.

The Watersons fear for Denise's future and Judy, in particular, has trouble looking beyond her appearance ("She looked so distorted. After our first child being so perfect, she was a shock."). It is obvious that their daughter would need aggressive medical intervention, or she would not survive. Because she is at a teaching hospital, affiliated with a medical school, this type of intervention is offered, and the Watersons immediately jump at the chance, not thinking of any implications for future decisions.

Over time, it becomes obvious that their daughter's condition is more serious than they had thought. Every test brings bad news and each surgery simply staves off what they begin to see as the inevitable. Finally, it becomes clear to the couple that Denise would not be able to live independently and, likely, would die at a young age. Finally, when she is two months old, her parents agree that "it is time to stop putting her through this." Dave approaches the physician in charge of her care, who informs Dave that, once medical treatment is initiated, he has on choice but to allow it to continue. The physician also tells the father how much his daughter "is contributing to medical knowledge" and that this could be part of her legacy.

At this point, the mission of the Watersons becomes their ending their daughter's suffering, but they are thwarted at every turn. They noticed that medical teams were changed regularly. Dave believes that this is to prevent team members from developing a close relationship with the couple. One particularly sensitive physician does inform them, unofficially, that he had been instructed not to speak with the couple. Finally, after almost two more months of watching their daughter go through test after test and facing a stated threat from a local group to seek legal custody of their daughter, the couple is approaching the breaking point. At this time, the father learns from a lawyer (a man for whom he is doing some construction work) that his rights as a parent were being interfered with and he had the right to remove Denise from the hospital and/or to refuse care. Armed with the information from the lawyer, he then goes to the hospital and is finally able to "release my daughter from this world." Both the husband and wife feel that their marriage, their older child, and their belief in the world and the future have all been damaged by the way in which the situation was handled. They no longer believe they can trust the medical establishment and are fearful (she) and angry (he) about what they might encounter, should they attempt another pregnancy.

The Mikulskis

For this family, it has been just over one year since the only son of Ed and Ann Mikulski was seriously injured in a freak accident. Jack, the youngest of three children -- 15 years younger than his next older sister, was very close to his father and the admitted favorite of his mother.

The accident resulted in his present, comatose state. At the time of the accident, he was just under 26 years of age; he recently turned 27. The sequence of the accident is as follows: Jack was walking to a friend's house when a motorcycle rider, rounding the corner at high speed, lost control of his cycle and plowed into the young man. The cyclist, who was not wearing a helmet, experienced only minor cuts and bruises (an irony not lost on the Mikulskis, especially Ed). Jack, however, was thrown against a building and suffered a severe blow to his head. At least in part because of his parents' age (he was born when his mother was 43 and his father was 51, making them 70 and 78 at present), Jack has been in institutional care since the accident.

Throughout the previous year, Jack has been viewed as non-responsive to his environment by most of the medical professionals (primarily physicians) and sporadically responsive by others (one nurse's aide is particularly insistent about this). Ann is adamant that her son responds to her voice, especially when she sings to him. A physician observed the mother and son together and determined that Ann was attributing meaning to Jack's random movements. The physician's view is that the young man has deteriorated over the past year and has no chance of recovery. He recommends that the family recognize the inevitable and "allow nature to take its course." He and the mother "had words," in part because of what the physician said and partly because he made this observation in front of Jack. She believes that her son's condition deteriorated slightly after he heard the doctor's comments. She is also convinced that her son has shown improvement and that he will recover.

While the mother concentrates her energies on helping her son to recover, the father rarely visits his son, focusing, instead, on his relationship with his grandson by their first daughter. He has agreed to support his wife in her quest to save their son, torn between believing the experts and hoping his wife is correct. His health has not been good since his son's accident and the couple's surviving children (their daughters) want to allow their brother to die, in order to save their father, who is recovering, very slowly, from a minor stroke he recently experienced. Their mother no longer wishes to speak with them, preferring to spend her time with her son and the sole nurse's aide who supports her view.


Question 1 What is your reaction to the decisions made in these three situations? What would you like to have seen done differently? How might things have been different? Draw on what you learned from the Kirschbaum article as you draw your conclusions.

The Context of Decision Making

Before reading any of the following links, read the Callahan article. He presents a picture of death in the American culture and the perception that it can somehow be overcome. As you read the following, think about which choice you believe you would make, along with the ramifications of the choice.

One part of the system that I would like you to consider, in addition to the four Winslade and Ross mention (the physician, the patient, finance, and bioethics), is the role of the family. If, for example, the patient is a dependent child, parents will make decisions about the welfare of the child. The parents, siblings, or children of an adult who has been determined to be incompetent may be pressed into service in the role of decision maker. Often, these people are as unprepared for this role as Winslade and Ross describe the typical patient to be. Yet, they often are unwilling to anticipate the possibility that their loved ones might need them to act in this capacity. It may be that, by avoiding the discussion of a possible death or incapacitation, they can prevent it from happening ("If you talk about it, that makes it real. We don't want it to be real, so don't talk about it.").

Making it Easier for Others

Although it is difficult to consider the fact that we will all die, not planning for one's inevitable death leaves the survivors with added complications. The readings, Funerals: A Consumer Guide, Wills and Estate Planning and the reading on green funerals all address aspects of the "functional" decisions to be made, ideally, by the person who will have died.

Making Informed Decisions

The type of aggressive health care, "heroic measures," depicted in the first two cases, is now being questioned. As many people have said, it often is not death that frightens people, it is the dying. The reading, Death--What You Can Expect, presents common signs of impending death. At the same time, just knowing what will happen during the final moments is not enough, and individuals wish to have some level of control over the situation, to the point of deciding to end their lives, rather than suffer what they may be experiencing as (or may anticipate to be) unremitting pain. This has led to interest in "living wills."

Living Wills

What has been called "living wills" actually are a combination of an advance directive for physicians and a durable power of attorney for healthcare decisions. The advance directive is intended to give the patient the right to make healthcare decisions, including refusing healthcare. The durable power of attorney allows another person, designated by the person making out the living will, to make healthcare decisions for that person, should he or she be incapacitated and unable to make them for him or herself. These two documents are intended to assure that one's wishes will be carried out in the future. They are not perfect, as they are vaguely worded and leave some latitude for decision making on the part of others in the family who have been designated as the individuals who can make these decisions for the patient. Look at the reading The Living Will .

Euthanasia and Assisted Suicide

There may be situations where those responsible for the care of another feel their only choice is to end the suffering of another. This may be because of severe or chronic physical pain. Perhaps he or she can no longer function mentally (e.g., with the progression of Alzheimer's Disease or following a stroke or series of strokes). This is highly controversial, as it takes the process a step further beyond attempting to ensure that the physician will not take heroic measures. The link to Euthanasia provides information on euthanasia. The Physician Assisted Suicide link explores another controversial topic.

Hospice Care

Another approach to illness and death-related decision making is to take advantage of hospice care. I have included several links to Web resources for you to explore: Hospice Net provides extensive connections to other resources on hospice. Of particular interest to the general audience are the links to Hospice FAQ.

Transplantation -- Organ Donation

One decision that some families face at the time of the death of someone they love is whether or not they should donate their loved one's organs. This may be tremendously difficult, especially if they do not know the wishes of the deceased person. They may also fear disfigurement of the body. They may feel it is contrary to the teachings of their religion. These and other issues are addressed at Organ Transplantation and Donation.

Other Choices

I have only addressed a small number of the possible choices that may be faced. In addition to euthanasia and physician assisted suicide, we could have addressed the choice to commit suicide and for family members to assist the suicide of a terminally or seriously ill family member. Abortion is another, relevant choice. I have found it interesting, for example, that in my research on couples who chose to terminate wanted pregnancies because of lethal or serious medical conditions, issues of quality of life and pain management were as much a factor as they are for people considering euthanasia as a choice.


Question 2 Which of these choices do you believe you would make? This is difficult to know, as it is easy to make decisions, as long as they don't count. Are there any of these that you feel you absolutely would not do? Have you written a will? Do you have a living will? Why? Why not?

General Conclusions

At the end of this week, post at least one conclusion to this week's discussion and post it to Oncourse for discussion.

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