People with advanced dementia have "a duty to die." Or so says Baroness Mary Warnock. My first reaction, after the shiver of shock finished running down my spine, was that whoever this woman is, surely as a baroness she can afford decent care for loved ones in the late stage of disease! And then I discovered that in addition to being a British government adviser, Lady Warnock is its "leading moral philosopher."
"If you're demented, you're wasting people's lives -- your family's lives -- and you're wasting the resources of the National Health Service," this philosopher says. With cold morality like that on their side, no wonder people in the UK are in full-scale panic over its dementia explosion. (You can't even get NHS reimbursement for drugs like Aricept over there.)
Of course she has it all backwards. The duty in end-stage Alzheimer's lies not with the afflicted but with the people around them -- and not to kill them but to love them, or at least act as humanely as possible. End-stage disease brings only rights (to a life of dignity, compassion), not duties.
That said, late-stage care can be rough, time consuming, and costly -- for the afflicted and their caregivers.
What you should know:
*Be aware there's a movement afoot to move toward palliative-care-only in the late stages. That is, if those with advancing dementia break a hip or develop pneumonia, they probably won't benefit from advanced testing and treatment. They're more likely to die within six months than someone without severe dementia who receives similar treatment, a famous 2000 study pointed out. So tread carefully if a health crisis develops. Did the person make his or her health wishes known before the dementia? Ask your loved one's doctor about his attitude toward palliative care, which is considered ethically acceptable in these circumstances.
* Don't go blindly. It's less scary and stressful if you learn all you can about what to expect.
* Engage as many resources as you can. If you're providing home care, you need helpers -- paid or unpaid -- more than ever. Consult a hospice as soon as the late-stage is reached. Hospice is all about comfort and dignity.
* Don't be overly heroic. Some situations are rougher than others. Even if you "promised" never to "put" your parent or loved one in a facility, round-the-clock care, incontinence care, and other issues common in end-stage Alzheimer's can simply be impractical for your circumstances.
*Stay open to the gifts within the duty. Others' caregiving stories can sometimes sound treacly or depressing, depending on your own life circumstances. And yet a thread that I hear so often is: "Man, I couldn't do it again -- I'm spent -- but I am so glad I did it."
Of course, Baroness Warnock would never discover those satisfactions. Since people with advanced dementia aren't even capable of deciding on suicide, perhaps she'd rather they do themselves in right at diagnosis! Never mind the quality of life that most people with the disease enjoy for years, often right to the end.