Dying with dignity
This is part two of a four-part series. Part three will run in Tuesday’s Business section.
When Brad Spurlock’s 73-year-old father was diagnosed in 1998 with advanced mesothelioma, a rare form of cancer found in his chest, he weighed his options.
He considered aggressive treatment, which offered slim hopes of extending his life the way he wanted. He looked at clinical trials. But in the end, adamant about quality of life versus quantity, he chose something else.
“My dad, being a very controlling type of person, he decided no” to traditional treatment, said Spurlock, who lives in St. Albans with his wife, Renee, and their 16-year-old son, Mychal. “He got his wishes. It was a good decision.”
The original six-month prognosis stretched into more than two difficult years, as the family also dealt with Spurlock’s mother, who continued to suffer from Alzheimer’s disease. But Spurlock and his wife say the tough time was made at least a little easier thanks to documents, known as advanced directives, which made clear what Spurlock’s parents wanted.
“Using the advanced directives made all the difference in the world, as far as the dying person being in charge, knowing what they want and doing what they want,” Spurlock said. “It was by far the best thing to do.”
Living wills, do-not-resuscitate orders and other forms offer patients a way to let family, doctors and other health-care providers know what they want done or not done when it comes to medical care at the end of their lives. A medical power of attorney form allows patients to designate someone else to make these decisions when they cannot.
Because few families talk about death and dying around the dinner table, life-and-death decisions are sometimes left to stressed relatives, already dealing with the trauma of a sick and dying loved one.
“When your family gets a phone call at 3 a.m., the chances of them making the right decision are zip,” said Dr. Bruce Foster, the Spurlocks’ family doctor. Foster directs the end-of-life and palliative care program at Thomas Memorial Hospital. He also gives seminars about advanced directives and how to deal with dying.
“Ask yourself this question,” Foster said. “Would you be surprised if someone in your family [is] dead in a year or two?”
If the answer is no, Foster said it might be time to talk about advanced directives, which requires learning about the words the forms use — feeding tube, intubation, cardiopulmonary resuscitation (CPR) and dialysis — and what they mean in context of your medical care when you’re near death with a terminal disease.
“The average person has unrealistic expectations about what health care can do,” said Dr. Alvin Moss, a professor of medicine at West Virginia University and project director with the state’s Center for End-of-Life Care.
For example, CPR, which Moss said almost always works on television, doesn’t always produce such good results for patients battling a terminal condition like cancer.
Doctors can answer questions about the different options, and most hospitals have palliative-care staff who can also help patients learn about these issues. The West Virginia Center for End of Life Care (www.wvend
oflife.org or (877) 209-8086) offers information as well. Hospital and nursing-home social workers can also help.
The next step is talking with your family about your wishes, a step Moss considers the toughest.
Spurlock said his father’s doctor prodded him into bringing up the culturally taboo subject with his father after he was diagnosed with cancer.
“I said, ‘I don’t want to talk about that stuff. What do you mean? It’s not normal,’ ” Spurlock recalled. “But I ended up doing it, and I ended up talking about it.”
Rex Thaxton, a family friend, did not have such a talk with his mother before Alzheimer’s stole her memory.
Thaxton, 48, who lives in St. Albans, has medical power of attorney for his mother, now 75, who lives in an assisted-living facility for Alzheimer’s patients. But he said they never talked much about her health-care wishes before it was too late.
“That should have happened,” Thaxton said. “It would have made everything easier now instead of me making decisions about my mom and what I think [is] right. Am I really following what her wishes would be? I think I am. But I don’t know for sure because we didn’t talk about it.
“It’s something you just got to steel yourself up for and sit down and do. Make yourself get the words out.”
In his book, “Death and Dying,” Foster blames the words associated with death and dying for people’s problems with talking about the subject: “decease,” “demise,” “extinction” and “loss” are just a few he mentions. But Foster encourages looking beyond these words and viewing death as a graduation to a next step.
“Fortunately or unfortunately, activities that surround death don’t feel natural since most of us only get one personal attempt at practice,” Foster writes. “There is also tremendous sociocultural pressures to avoid the situation altogether.”
Once families get past these hurdles, the forms require a person’s signature along with those of witnesses and a notary. In some cases, a doctor must sign. You don’t need a lawyer to draft or sign the forms, Moss said. They are available online or from hospitals or doctors’ offices.
With the forms completed, people should make sure their family members know about them, what they say and where they are kept. Moss said patients can give copies of the forms to the hospitals where they will likely end up being treated.
West Virginians appear to be embracing advanced directives at a greater rate than others elsewhere in the country. Surveys show 40 percent of state residents have filled out such documents — twice the national average, Moss said.
The state’s law governing advanced directives was last updated in 2002 and has since served as a model for lawmakers in other states.
On the federal level, U.S. Sen. Jay Rockefeller co-sponsored a bill in June that would reimburse doctors through Medicare for consulting with patients about end-of-life planning. The legislation, still before a Senate committee, also calls for a national public education campaign and a national clearinghouse for information about advanced directives and end-of life decisions.
Brad and Renee Spurlock, both in their 40s, haven’t filled out advanced directives for themselves yet. But they have talked to their 16-year-old son about their wishes. And Renee plans to have a serious talk with her parents, who live in Charlotte, N.C., the next time they visit.
“I think the most important thing is the dying person being in control of their wishes,” she said.
To contact staff writer John Heys, use e-mail or call 348-1254.
Advanced directives in West Virginia
The following documents are available to provide guides for your end-of-life care:
For more information about these forms, contact the West Virginia Center for End-of-Life care or call (877) 209-8086.