Young people with terminal illnesses fight harder to stay alive and also feel a greater sense of loss.
We all know it. Someday we’ll die.
We’d like to think that it’s not going to be any time soon.
The Centers for Disease Control and Prevention (CDC) report that the life expectancy at birth for the U.S. population is close to 80 years old, so most of us assume we’ll reach this age or at least come close to it.
Even those faced with a terminal condition at a young age fight to overcome their illness to reach that expected lifespan.
According to a recent study by the Dana-Farber/Boston Children’s Cancer and Blood Disorders Center and Kaiser Permanente Southern California, two-thirds of teens and young adults who have end-stage cancer use aggressive treatment measures.
“I certainly am not ready to die. Living with a terminal illness actually can bring a desire to live into focus more clearly than just about anything else I’ve experienced,” said Michelle Devon, a 44-year-old woman in League City, Texas, who was diagnosed three years ago with chronic thromboembolic pulmonary hypertension (CTEPH) and congestive heart failure.
The only treatment for CTEPH is a complex procedure called pulmonary thromboendarterectomy (PTE). If successful, it can cure up to 90 percent of people who have the surgery. However, Devon isn’t able to undergo the surgery due to other medical conditions.
At this point, Devon’s only treatment is managing her symptoms. She takes 32 different prescription medications daily, wears a nasal cannula for supplementation oxygen around the clock, uses a wheelchair outside of her home, and takes diuretics that require her to stay near a bathroom.
She hopes to someday be well enough to qualify for the PTE surgery.
”Getting treatment has made a huge difference in my quality of life and also my quantity of life, and I do think that my age factored into how aggressively I and my doctors are choosing to treat and fight this condition,” she said. “If I were considerably older, I might not even be considering trying to qualify for [PTE] at all and would be opting only for maintenance treatment.”
The Dana-Farber study showed that 633 people, ages 15 to 39, who received care at Kaiser Permanente Southern California and who died of cancer between 2001 and 2010, were more than twice as likely as Medicare patients (age 64 and older) to utilize intensive care and/or emergency rooms in the last month of their life.
“This doesn’t surprise me. Sometimes in a young person, if they know they are dying, they may think adding months of life are important,” said Dr. Robert M. Arnold, medical director of the UPMC Palliative and Supportive Institute and professor of medicine at the University of Pittsburgh.
“If you’re only 18 or 20, living more months or another year is a big proportion of time compared to your entire life,” Arnold noted.
Dr. Scott A. Irwin, director of patient and family support services at Moores Cancer Center and associate professor of clinical psychiatry at the University of California, San Diego School of Medicine, agrees.
He says younger people may feel a greater sense of loss that drives their desire to keep receiving treatment.
“When you’re young, you think you’re going to have a career, raise kids, be a grandparent, retire. So the more of those stages you’ve gone through, there’s less of a sense of loss, if you will,” Irwin said.
He adds that data shows that people who face death at a younger age are at a higher risk for depression. In addition to the feeling of loss, Irwin says the unexpectedness and not following what is perceived as the natural order of life and death could contribute to this.
“With that being said, it always depends on the individual. I see lots of elderly people who are ready to die, especially if they’ve been getting more frail over time and expecting it. But I’ve also seen as many older people who are not ready and don’t want to die,” Irwin said.
One consistent observation Irwin has noticed about younger people facing the end of their life is their willingness to keep trying to stay alive.
“You don’t see younger people who say, ‘I’ve lived my life and have done all these things, so it’s my time,’” he says. “There seems to be more of a bravery about facing death among some younger people. I remember one young mother and I suppose she was being brave for her kids.”
This was the case for Devon when she learned of the seriousness of her condition.
“I have my kids who are young adults and I want to be around for them. I’d like to see my grandkids someday,” she said. “These are the things that keep me going back to the doctor and taking my meds and even getting up out of bed every day, when sometimes I don’t want to.”
Authors of the Dana-Farber Cancer Institute study reported that more research is needed to understand if people are given enough support and information about their end-of-life options.
“I don’t think we as physicians are as upfront about prognosis as we could be,” said Irwin. “We all live in a bell-shaped curve. Physicians are afraid of denying that person the one in a million chance of winning the lottery.”
The older the person is, Irwin added, the more likely they are to understand that they’re taking a risk by going through treatments and that doing so could worsen their quality of life without much benefit.
Arnold points out that it’s harder psychologically for clinicians to talk about end of life with younger people.
“There’s a societal feeling that’s it’s unfair and that may make it harder for the doctors and nurses to get their head around it,” he said. “If you’re 45 and there’s a 2 or 5 percent chance that you could do well, then it might be worth it, versus if you’re 85.”
Irwin said this logic is partly a product of how the United States views death.
“We are more death phobic than other cultures. In general, those who are in medicine have been trained to save lives,” he said. “It’s changing now, but death wasn’t talked about in medical school and we weren’t trained on how to deal with death and dying in the past. But who better to tell people and care for people when they’re dying than physicians?”
A person’s willingness to receive treatment may or may not depend on how it will affect his or her quality of life.
“What we know is that clinicians can interpret people’s quality of life differently than patients do,” said Arnold.
For this reason and because each person’s view on quality of life is different, Irwin said physicians have to ask patients to define what quality of life is to them.
“You can’t predict this,” said Irwin. “We need to make it a point to understand what quality is for somebody. For one person that might mean being totally debilitated but able to spend time with their kids, while someone else might feel that if they can’t get out of bed but are cognizant, that’s not enough.”
Devon said her quality of life has changed drastically since her diagnosis.
“The entire time my kids were growing up, I was a single mom. I was fiercely independent. Having to depend on my family now is hard. It diminishes me,” she said. “Some days, I’m really angry about how much I’ve lost and know I’m going to continue to lose. Some days, I’m embarrassed and frustrated that I have to inconvenience so many people just to do ordinary things. Other times, I’m grateful to have the time I’ve had and still have left.”
While her condition is terminal, Devon says some people with CTEPH who receive treatment for symptoms can live up to 12 years or more.
“The ones who have lived the longest with it are those who got diagnosed early on, like me, and who had adequate treatment early on, too. I think a will to live and a good doctor who believes you can live are necessary,” she said.
When Irwin has patients who can’t decide whether or not to go on with treatment, he suggests they try the treatment for a limited time with clearly defined goals and desired outcomes.
For instance, he may suggest trying the treatment for the time expected to see results, and then evaluating if the treatment reaps benefits.
“If it doesn’t, we’ll stop and if does maybe we’ll continue. If the patient feels they have a horrible quality of life, we can also stop,” he said.
This type of communication is necessary with both doctors and loved ones, notes Devon.
“We’ve talked about this a lot since I’ve been sick, with my family and those who are with me at the hospital,” she said. “I’ve made a living will and a regular will, too. I’ve given folks power of attorney and told them what my decisions are.”
Devon has also talked about this with her doctor.
“I have talked about how far treatment should go,” she said. “My condition makes it very hard to breathe at the end, and it can be quite uncomfortable, so there are stages of care that are listed out for how I want to be treated when it gets close to the end.”
While Arnold says healthy people under 65 years old may not need to create a living will like Devon did, he does suggest that they talk to their parents and grandparents about it.
“These conversations need to happen,” he said.
Irwin says the topic should be discussed across society, starting when people are healthy.
“Whether young or old, we need a better understanding of dying and less fear about it as a culture so providers, patients, caregivers, and healthy individuals can help people live their lives as fully and with as much dignity and joy that they can, at whatever age they are,” he said.