Bob Levey: Now is a good time to raise the subject
From The Beacon October 2008
They call it "The Conversation." They say it isn't taking place as often as it should.
They are worried. They are in a position to be.
A few weeks ago, I had a two-hour lunch with three top officials of Montgomery Hospice, a 27-year-old Rockville-based hospice service that has made death less painful for patients and families alike.
Death shows no sign of becoming optional, so no hospice is ever short of customers. But my lunch companions said they're beginning to notice that some recent arrivals - generally from the World War II generation - are sliding into their final months without having had a thorough discussion of end-of-life issues with their children.
"Because they lived through World War II, and in some cases the Great Depression, they learned to function on their own," said Robert A. Washington, Montgomery Hospice's vice president of counseling services. But once these aging Americans are nearing death and hospice care looms as a possibility, they often duck or rebel.
The issues are "privacy, independence and control," Washington said. They don't want to lose the first, and they don't want their children to manage the second and third, even when the "kids" are well beyond the age of 50.
No one can become a hospice patient unless two doctors certify that he or she is within six months of death and can no longer be expected to respond to medical treatment.
About half the time, this endof- life determination is given to cancer patients. But it can also be given to patients with heart disease, dementia, congestive heart failure, chronic obstructive pulmonary disease or amyotrophic lateral sclerosis (Lou Gehrig's Disease).
So, reluctance to have "The Conversation" doesn't correlate to disease. Washington believes it's a matter of habit and laziness. He cites his own situation as proof.
His parents, 79 and 81, are both afflicted with serious illnesses, although neither is at death's door. Even though Washington spends much of his professional life urging "The Conversation" on patients and their children, he hasn't had it with his own parents. His sister lives in Chicago, as do his parents, so "maybe I've just kind of assumed that she'll do it," he said.
Then there's the nature of the parent-child relationship itself. "It's the parent's life, so in every child there's the feeling that the parent ought to initiate The Conversation," Washington said.
But when that hasn't happened, and shows no sign of happening, Washington and his colleagues believe that children must step in.
So why haven't more done so? Montgomery Hospice believes that some people are too involved with their own lives and simply want to dodge hard choices or uncomfortable moments.
Others are not yet ready to accept an end-of- life diagnosis. They are still hoping for one last medical miracle. Still others want to dump all decisions, emotional and otherwise, onto trained and paid hospice staff.
Regardless, Washington urges all families in or near end-of-life situations to conduct "The Conversation," because it so often clears the air - for parents and children alike.
In a world of financial pressures, you might think that "The Conversation" would in part be about money. The Montgomery Hospice staff told me that it seldom is. Because insurance almost always covers hospice care, either via federal programs or private insurance, the hospice decision doesn't mean that life savings have to be spent on end-of-life care.
Similarly, because accepting hospice care means that a patient will no longer seek or accept medical care, a family can actually save money by not seeking an expensive final medical miracle.
Washington said he has been especially cheered by how few boomers seem to be wishing death upon their parents so that hefty inheritances can pass to them.
"The World War II generation certainly did pamper and baby their kids in a lot of cases," he said. "But these people are not wishing earlier-than-necessary deaths on their parents. They just want their parents to be comfortable. What we also want is for those parents to be emotionally comfortable."
In raising this sensitive subject, families should consult a document called "The Five Wishes"- a special living will developed by a committee of the American Bar Association. It has the full force of law in most states, including Maryland, Virginia and the District of Columbia, and doesn't require a lawyer.
It also provides a handy framework for conducting "The Conversation," regardless of illness, gender, race, religion or financial circumstances.
Its five sections address:
Who will make decisions for me when I can't make them for myself?
What kinds of medical treatment do I want or not want?
How comfortable do I want to be as I near death?
How do I want others to treat me?
What do I want my loved ones to know as I approach death?
If you haven't discussed these issues with your family yet, please take a nudge in the ribs from a man who, like Washington, ducked when he shouldn't have.
Throughout her late 70s, my mother was failing, slowly but surely. She thought that food was love and more food was more love. That meant a weight gain of more than 50 pounds, with an accompanying bout of congestive heart failure.
Her doctors (when she agreed to visit them, which was rare) warned her that she was near death. She scoffed - and filled her plate again.
Once she and I had "The Conversation," she was surprisingly reasonable and accepting of her fate. We moved her to my brother's home. She lived for 18 more months. She died just after her last breakfast.
Of course, I should have had "The Conversation" with her many years earlier. I will always regret not having done so.
But I will always remember with a smile that a discussion I thought would be one of our toughest proved to be surprisingly easy. May it be as easy for you, if you've been putting it off.
Bob Levey is a national award-winning columnist.