Family Caregiver Alliance Subtly Insinuates Assisted Suicide into the Care Giving Mix
This is subtle, but I think, very alarming. The Family Caregiver Alliance touts itself as a resource for people providing care for family members and others. From its "End of Life Choices" published on the FGA Web site:
Family Caregiver Alliance (FCA) seeks to improve the quality of life for caregivers through education, services, research and advocacy... FCA provides direct family support services for caregivers of those with Alzheimer's disease, stroke, head injury, Parkinson's and other debilitating disorders that strike adults.Sounds good, and I am sure it is. But then it gets scary: One of the "resources," indeed the first listed after the group itself (due to alphabetization), is the assisted suicide advocacy group Compassion and Choices.
In light of that listing, following statement about care giving for people who are dying takes on a decidedly darker tone:
As death nears, most people feel a lessening of their desire to live longer. This is not a matter of depression. Instead, they sense it is time to let go, perhaps as in other times in life when one senses it is time for a major change. Examples might be leaving home, getting married, divorcing or changing jobs. Some people describe a sense of profound tiredness, of a tiredness that no longer goes away with rest. Others, who may have overcome many adversities in their lives, reach a point where they feel they have struggled as much as they have been called upon to do and will struggle no more. Refusing to let go can prolong dying, but it cannot prevent it. Dying, thus prolonged, can become more a time of suffering than of livingThey don't come right out and say it--and hospice organizations are also listed as resources--but the C and C endorsement, and the choice of words used, would seem to be at least a "between the lines" endorsement of assisted suicide as a means of "letting go"--both to benefit the cared for and the care giver.
Family members and friends who love the dying person may experience a similar change. At first, one refuses to admit the possibility of a loved one dying. Then one refuses to accept the death happening. Lastly, one may see that dying is the better of two bad choices, and be ready to give the loved one permission to die. As mentioned, the dying are distressed at causing grief for those who love them, and, receiving permission to die can relieve their distress. There is a time for this to happen. Before that, it feels wrong to accept a loss, but after that it can be an act of great kindness to say, "You may go when you feel it is time. I will be okay."
The section on "Making the Decision," adds credence to my concern:
Is it time to let go? Or time to give a loved one permission to die? There are three ways to help decide. First, look at the medical situation. Has the illness really reached its final stages? When it has, the body is usually moving on its own toward dying, with strength declining, appetite poor, and often the mind becoming sleepier and more confused. Treatments are no longer working as well as before, and everyday activities are becoming more and more burdensome. In a sense, life is disappearing. Second, talk with people you trust. Discuss the situation with the family members and friends who seem to be able to see things as they are. You might also talk with people who are not personally involved. [Me: Meaning C and C?] Choose the people whose judgment you trust, not just those with an official role of giving advice. [Me: Meaning physicians, clergy, mental health professionals?] Most importantly, what does the dying person think? Third, listen to your heart. Try to see beyond your fears and wishes, to what love and caring are saying to you. What is really best for the one who is dying, and for the others around? Given that death is unavoidable, what is the kindest thing to do? It might be holding on. It might be letting go.Because it endorses Compassion and Choices and links directly to the assisted suicide group, this text, which might otherwise seem to be reasonable, is not benign. When care giver advocates swallow the hemlock, vulnerable patients may be put at real risk.
Labels: Assisted Suicide. Family Caregiver Alliance. Care Giving.
posted by Wesley J. Smith @ 10:15 AM
6 Comments
6 Comments:
What's particularly telling is that on the one hand it talks about a situation where the disease has reached its final stages, and on the other hand it talks about giving permission to die and the like. If the disease has really reached its final stages, the person is going to die soon regardless. The whole "letting go" and "giving permission" stuff is irrelevant. I notice, too, the hodge-podge description: On the one hand, we're to imagine people who are virtually unconscious--they are so close to death that they are sleepy all the time, shutting down. Such people are obviously bed-ridden. On the other hand, we're to imagine people who are merely feeling a lot of tiredness and for whom ordinary daily tasks are becoming more difficult. The latter group _certainly_ need not be dying in any meaningful sense.
I don't know... I am a hospice RN, and all of this seemed perfectly reasonable to me until Wesley pointed out that they endorse C&C and link to them on their website.
It is tough for the dying and for their caregivers sometimes to acknowledge that they are dying. Especially when it is a younger person, the natural inclination (which is not wrong, btw) is to keep fighting and fighting. But sometimes the disease overwhelms the person, and the person's needs overwhelm the caregiver, and it's time to bring in hospice. But it is still a very difficult thing for some families to do, because it means they are not fighting anymore. And they don't know what to do with themselves when they aren't fighting the disease. It's so difficult to go from the fight mentality to the acceptance mentality, but it is ultimately something they must do in order to say goodbye.
As an admission hospice nurse, I am the first hospice person my patients often see, and while I don't want to admit anyone on hospice who doesn't wish for it, I often see people who really really need our palliative care, yet cannot acknowledge that they are dying yet.
Heather: Indeed. It is the C and C endorsement that changes the meaning of what is being said. Some of the language is from the C and C playbook.
I agree with your interpretation that they are discouraging discussion with professionals trained to think and speak mostly in matters of life and death (i.e. the clergy).
Also subtle, but present, is the introduction (or quotation) of another state of being that is neither life nor death - that of suffering.
As a theologian, I am keenly aware that to live is often to suffer. These folks make a distinction (and also quantify the suffering - you shouldn't consider euthanasia for yourself if your mother is dying; if you are dying, however, then the suffering merits euthanasia) that honestly defies reasonable logic. Show me life apart from suffering and I'll show you a fairy tale. Oops, even fairy tales have suffering! There is no life apart from suffering.
The problem is not that people suffer; the problem is that people do not understand why they (and everyone else) will die. When people understand why all of us will die, their suffering will have meaning.
The text seems fine to me. The fact that they link to such a group doesn't bother me. People should be free to make their own end of life decisions.
ElderGuru: If you are for assisted suicide, the idea of caregivers covertly pushing C and C as a mere resource for care wouldn't bother you any more than a spider directing flies to the web.
If they are for assisted suicide they should come right out and say it so people can judge whether that is the kind of organization to which they want to heed or belong.
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