Skip to main content
The Globe and Mail
Get full access to globeandmail.com
Support quality journalism
Just $1.99 per week for the first 24weeks
Just $1.99 per week for the first 24weeks
The Globe and Mail
Support quality journalism
Get full access to globeandmail.com
Globe and Mail website displayed on various devices
Just$1.99
per week
for the first 24weeks

var select={root:".js-sub-pencil",control:".js-sub-pencil-control",open:"o-sub-pencil--open",closed:"o-sub-pencil--closed"},dom={},allowExpand=!0;function pencilInit(o){var e=arguments.length>1&&void 0!==arguments[1]&&arguments[1];select.root=o,dom.root=document.querySelector(select.root),dom.root&&(dom.control=document.querySelector(select.control),dom.control.addEventListener("click",onToggleClicked),setPanelState(e),window.addEventListener("scroll",onWindowScroll),dom.root.removeAttribute("hidden"))}function isPanelOpen(){return dom.root.classList.contains(select.open)}function setPanelState(o){dom.root.classList[o?"add":"remove"](select.open),dom.root.classList[o?"remove":"add"](select.closed),dom.control.setAttribute("aria-expanded",o)}function onToggleClicked(){var l=!isPanelOpen();setPanelState(l)}function onWindowScroll(){console.log("scroll");var l=isPanelOpen(),n=0===(document.body.scrollTop||document.documentElement.scrollTop);n||l||!allowExpand?n&&l&&(allowExpand=!0,setPanelState(!1)):(allowExpand=!1,setPanelState(!0))}pencilInit(".js-sub-pencil",!1);

In this Wednesday, June 1, 2016 photo, Amanda Evans-Clark looks over photos of her husband, Joe Clark, and their daughter at their home in Carmel, Ind. He died of advanced colon cancer at 31, after a year of chemotherapy and last-ditch major abdominal surgery.

Michael Conroy/Associated Press

Two months before Joe Clark died of colon cancer at the age of 31, a doctor gently told him it was time to stop treatment.

He had suffered through more than a year of chemotherapy that produced painful sores in his mouth, last-ditch major abdominal surgery had left behind excruciating scar tissue and hope had dried up. But the end of treatment had a surprise effect on Clark and his wife.

"It was a whole new way of thinking to wrap our minds around," his widow, Amanda Evans-Clark, recalled. No more "fight mode," she said. "We finally felt like we were allowed to live."

Story continues below advertisement

When to stop aggressive treatment is one of the most wrenching decisions in cancer care. Medical guidelines say dying cancer patients shouldn't get harsh and painful treatment, but new research suggests it happens almost all of the time.

During their last month alive, three out of four cancer patients younger than 65 got too-aggressive treatment and only a handful got comfort-based hospice care instead, according to the recent study.

There are many reasons why, but one of them is this, said University of Chicago palliative care specialist Dr. Monica Malec: "There's nearly nothing harder than being faced with a patient who's begging you not to give up on them."

Dying patients and their families are sometimes in denial about their illness, and sometimes don't understand the limitations of medical treatment, the researchers and other specialists say.

Those misunderstandings can often be avoided if doctors begin end-of-life conversations early in the process of treating patients whose cancers are likely to be deadly. But those talks often never happen, Malec said, or they don't happen until the situation has progressed to crisis, because they're just too difficult.

The new study is an analysis of health claims data involving more than 28,000 cancer patients who died between 2007 and 2014. Their end-of-life treatment included hospitalizations, chemotherapy and invasive procedures. Fewer than one in five patients received hospice care.

"There are hundreds if not thousands who undergo too much therapy and too much suffering for every one person that we have who ends up having a miracle," said Dr. Otis Brawley, the American Cancer Society's chief medical officer.

Story continues below advertisement

The study was presented Monday in Chicago at the American Society of Clinical Oncology's annual meeting.

Dr. Ronald Chen, the study's lead author and a cancer specialist at the University of North Carolina in Chapel Hill, said the decision is still a struggle, even when he knows hospice might be the right choice. "If I can offer chemotherapy or if I can offer radiation treatment, then I'm not giving up hope," he said.

Wendy Sparks of Oklahoma City, Okla., says watching her elderly mother and younger sister both die of cancer within the past three years changed her thoughts about end-of-life treatment.

Her mother stopped chemo after her doctor assured her that ending treatment didn't mean giving up. But her sister, Nikki Stienman, kept up the treatment and suffered severe side effects from what her sister thinks was a needless final round of chemotherapy before she died at 38 of metastatic lung cancer in 2013.

"You're not giving up if you don't do treatment," Sparks said. "You're still fighting for your life, in a different way. You're fighting to have good days."

Dr. Andrew Epstein, a palliative care expert with the oncology society, said the new research, which echoes studies in older cancer patients, is important because less is known about end-of-life care for younger patients.

Story continues below advertisement

Too few doctors know about hospice, which is among the best but most under-used resources, he said.

But abandoning treatment and seeking hospice care is sometimes seen as surrendering, especially with young patients, said American Cancer Society's Brawley. "When you're dealing with young people, in their 40s, 50s, even 60s, it's just so difficult to accept that this person is going to die," he said.

Clark, an Orlando businessman, was diagnosed in 2011, two days before his 28th birthday and two months before his wedding. Instead of a honeymoon, he had chemotherapy.

The treatments seemed to work, until a year later, when shortly after his wife learned she was pregnant, tests showed the cancer had spread aggressively.

"No one uses the words like, 'incurable,' " Evans-Clark said. "We said, 'What's next?' and I remember hearing, 'You're going to be on chemotherapy,' and we said, 'How long?' And they said, 'Indefinitely.'" She recalls turning to look at her husband, "and he just broke down crying."

The couple created a blog detailing their cancer ordeal. In an entry four months before he died, next to a photo of nine pill bottles on his night table, Clark wrote, "I don't want to take any of them, but the doctor says I have to … This isn't what they said was supposed to be! I'm supposed to enjoy all the small moments; all the ones that seem to matter the most, yet we let them slip from our attention so quickly. Because of the treatment plan, I can't even do that."

Story continues below advertisement

Evans-Clark remembers agonizing discussions with her husband about quantity versus quality of life. Major abdominal surgery failed to stop the cancer from spreading. Chemo had caused mouth sores and there were problems with the ostomy bag that replaced his diseased intestines.

"I remember looking at him and he was so thin, and he was so depressed, and everything that made him a man … had been taken from him," she said.

They moved to Indianapolis, where a doctor finally sat them down and said, "I don't think this is worth it anymore."

It was an epiphany.

Clark starting receiving comfort care at a hospice centre that felt more like home than a hospital, where he could finally focus only on spending time with his wife and baby daughter.

"I was able to be his wife versus being the one pushing all the meds," Evans-Clark said. "I was only given two more months with him but I would say they were some of the best months I had with him."

Story continues below advertisement

Report an error
Due to technical reasons, we have temporarily removed commenting from our articles. We hope to have this fixed soon. Thank you for your patience. If you are looking to give feedback on our new site, please send it along to feedback@globeandmail.com. If you want to write a letter to the editor, please forward to letters@globeandmail.com.

Welcome to The Globe and Mail’s comment community. This is a space where subscribers can engage with each other and Globe staff. Non-subscribers can read and sort comments but will not be able to engage with them in any way. Click here to subscribe.

If you would like to write a letter to the editor, please forward it to letters@globeandmail.com. Readers can also interact with The Globe on Facebook and Twitter .

Welcome to The Globe and Mail’s comment community. This is a space where subscribers can engage with each other and Globe staff. Non-subscribers can read and sort comments but will not be able to engage with them in any way. Click here to subscribe.

If you would like to write a letter to the editor, please forward it to letters@globeandmail.com. Readers can also interact with The Globe on Facebook and Twitter .

Welcome to The Globe and Mail’s comment community. This is a space where subscribers can engage with each other and Globe staff.

We aim to create a safe and valuable space for discussion and debate. That means:

  • Treat others as you wish to be treated
  • Criticize ideas, not people
  • Stay on topic
  • Avoid the use of toxic and offensive language
  • Flag bad behaviour

Comments that violate our community guidelines will be removed.

Read our community guidelines here

Discussion loading ...

To view this site properly, enable cookies in your browser. Read our privacy policy to learn more.
How to enable cookies