The final decision
Death doesn’t have to be scary if you know how you or your loved one wants it to happen
How do you want to die?
It’s a question nobody likes to ask, and very few of us even want to contemplate. But if anything is inevitable in this life, it’s that we all will die, eventually.
For Dianna Boehm, knowing the answer to this question for her husband was invaluable. Leonard had been battling cancer for 10 years, had undergone surgeries, chemotherapy, radiation. When, after a year of remission, his cancer returned in August 2009, he had a difficult decision to make: Do I go through more treatments, or not?
“At that point, Leonard decided he didn’t want to do it anymore,” explained Dianna. “He decided to do hospice. He was real adamant of how he wanted to go. Having been through a lot of treatments in the hospital, he didn’t want that. With hospice, you get a lot of support.”
For both of the Boehms, hospice care ended up being the right decision.
“I had reservations, just like everybody else,” Dianna said. “I thought, ‘This will be in my own home, he’s going to die in my home,’ and I got the heebie-jeebies. But it was a good experience. Life-changing, really.”
With Enloe Hospice, the Boehms had access to nurses, doctors, social workers, a whole network of trained helpers to get them through a difficult time. When Leonard needed medications or equipment, like a wheelchair, his hospice nurse brought it to his house. There was no longer a need to go to doctors’ offices or the pharmacy—those services came to him.
“Our biggest focus is on quality of life,” explained Anna Marinelli, charge nurse for Enloe Hospice. “We give patients and families control. We tell people, ‘You can opt out at any time.’”
On any given day, the hallways of Enloe Medical Center are bustling with activity. Doctors hurriedly make decisions and visit patients while nurses discuss pain levels and technicians take X-rays. This is a place of healing, where the sick and injured go to get better. But what about the people whose prognosis does not include several years of good health? What about those for whom more treatment might not be the best option?
Hospice gets a bad rap for a lot of wrong reasons. Marinelli says she thinks people are afraid of hospice because they’re often afraid of death.
“Death is so feared, and a lot of people, when they think of hospice, they think of death,” she said. “It’s hard to get past that. Some people just aren’t ready to give up therapy.”
For Enloe’s part, there are several ways in which staff members work to support dying patients and their family and friends. The first is called the White Rose Policy, the objective of which is “to provide dying patients and their family and friends with a supportive and comforting environment that is quiet, respectful and compassionate,” according to Enloe spokeswoman Christina Chavira.
Another, which goes hand-in-hand with the policy, is the White Rose Companion volunteer program. This is particularly helpful for patients who do not have family members or friends nearby because volunteers are on hand to lend a sympathetic ear and even help bridge the gap between patient and medical staff.
The third way Enloe helps patients at the end of life is through their case workers, who are assigned to patients and are there, independent of the doctors, to explain options, including hospice.
Last but not least, there are people like Trudy Duisenberg, the hospital’s community outreach coordinator, who are making an effort to educate the public about hospice and end-of-life decisions in general through a program called Five Wishes. Passages, a local services clearinghouse for seniors, and Enloe are working together on a campaign to distribute thousands of pamphlets to people in Butte County to help them let their loved ones know their preferences.
“We want to get it into people’s hands before they arrive at the hospital,” Duisenberg said.
Five Wishes comprises the subjects of naming a health-care agent in the event you can no longer make decisions for yourself, what kind of medical treatment you want and don’t want, comfort levels desired, how you want to be treated and, last, what you want loved ones to know (funeral wishes, how you want to be remembered).
A lot of times, hospice nurse Marinelli will meet with patients who have accepted death and are ready for hospice, but their family members are hesitant to stop treatment, seeing hospice as “giving up.”
But other options include further treatment in hospitals; dying at home without the support of social workers, nurses and doctors; or moving to an assisted-living facility.
“We keep people out of the ER,” explained Marinelli. “A lot of people think you have to be on death’s doorstep to get hospice care. That is not true. We’ve had patients who are still working—it’s the whole quality-of-life thing.”
What’s more is that there’s help for family members like Dianna, too. When her mother fell ill in September of last year, the decision wasn’t difficult—she called up hospice, and sat down with some of the same nurses who had worked with her husband. A few months later, she joined a bereavement group through hospice, and she’s been active with her fellow members ever since.
“They don’t just cut you loose after the event,” she said. She still gets phone calls about once a month from a hospice volunteer checking in to see how she is doing. That will continue for a year after her mother’s death.
“These people who do hospice care, I don’t know how they do it,” Dianna said.
Marinelli emphasized that Medicare does cover hospice, as do most private insurance companies. But they will take on a case regardless of whether a patient has insurance.
“The quality of care is not different; we don’t treat a patient with good coverage any better than one without,” she said.
“I feel like I’m a kind of advocate [for hospice],” Dianna said. “If somebody were facing this situation, I would really tell them to explore this option.”
How politics got in the way of better end-of-life practices
End-of-life planning has been a hot topic in the news lately. Back in 2009, when President Obama first unveiled his health-care-reform bill, Republican politicians like Sarah Palin started talking about “death panels” that would decide who would receive health care under Medicare.
But what was actually written into the bill would have allowed Medicare to reimburse doctors for discussing end-of-life care, including advance directives, with their patients. This section of the bill was ultimately omitted from the final draft signed by Obama after attracting so much negative publicity.
Enloe social worker/case manager Stephanie Sicke sees terminal patients regularly as part of her job. When she first takes a case, she often sits down with the physician, the patient and the patient’s family to discuss the diagnosis and plans for the future. What she sees a lot of, however, is patients who come in incapacitated, so their loved ones are left with the tough decision of whether to continue care.
“It’s very rarely just the person lying in the bed that we’re working with,” she said. “Often families are in the difficult position to try to understand the diagnosis and figure out what their family member would want.”
That’s why discussing the topic when you’re healthy is so helpful for family members and doctors when it comes time to make the tough calls.
Then there’s the issue of money. In a Duke University study of Medicare costs, hospice—which has been covered by Medicare since 1982—was found to have reduced costs by an average of $2,309 per patient. The study also indicated that if hospice were used for a longer period of time, it would cut costs further for seven out of 10 patients.
An even more telling statistic, however, is a finding published in 2010 by the New England Journal of Medicine that lung cancer patients who went into hospice care early actually lived up to 2 1/2 months longer than those who delayed hospice care.