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Palliative Care: A Difficult Decision

separator While there’s been a lot of good news about advances in cancer treatment over the last 50 years, for some people, the news about their own cancer isn’t always good. Sometimes, you’ve gone through one series or more of treatments and the cancer has returned and there’s little hope of a cure or a long-term remission. At this point, patients and their doctors often make the decision to change the focus of their care. Instead of hoping for remission or a cure, they realize it’s time to concentrate on relieving suffering and making each day meaningful.

This different treatment approach is called “palliative care.” 

People with cancer generally decide on palliative care when there’s no longer much hope that treatment will prolong life, or when there really aren’t many other treatment options left. This is when cancer has reached an advanced stage. Even though you feel certain in your heart that it’s time to stop hoping for a cure, deciding on palliative care is one of the hardest decisions a patient and family members can make.

Kerry and Rick’s decision
Kerry and Rick had been married for 10 years when they found out Rick had cancer. Rick was an artist, and his first symptom of cancer was back pain. He spent hours and hours at his desk illustrating covers for book jackets. He thought the back pain came from hunching over his desk. For a long time, he did nothing but take aspirin. He would get massages now and then, but they didn’t help.

Finally, after Rick endured months and months of pain, Kerry insisted that he see a doctor. A chest x-ray showed a “shadow” on his lung. Doctors performed a bronchoscopy and did a biopsy of lung tissue and cells. They learned that Rick had lung cancer. Immediately after the bronchoscopy, they performed other examinations and saw that the cancer had spread from his lungs to his bones.

“I was out in the waiting room for the longest time,” says Kerry, “waiting and waiting to learn the results of the bronchoscopy. Finally after hours and hours, the doctors came out and told me that Rick had cancer. They showed me scans they took, and basically it was all over his body. I was in shock. I just felt numb. I couldn’t believe it.”

Rick was 40 years old and he had advanced cancer. They learned that there was some hope that radiation and chemotherapy might help, but, Kerry said, “All the treatments would do was buy us some time. There wasn’t any real hope of a cure. But Rick said, ‘I’m only 40. I have to try this. I have to see if there’s anything that will help.’ ”

He had the treatments, but there was never any good news. Tumors didn’t get smaller and the cancer continued to spread. Kerry and Rick together made the decision to stop treatments because they were making him feel so sick.

“This was one of our hardest times,” says Kerry. “I knew that Rick was dying, but he never wanted to talk about that. And he wanted to protect his parents. They would call and ask how he was, and he’d tell them things were going well. He asked me never to tell them the truth.

“But the whole time, he was getting weaker. He stopped going downstairs. He could hardly eat. He got so skinny. He couldn’t work at all, so I was the only one earning money. I was really lucky, because the people at my job were great. They basically gave me a computer to take home and said, ‘Do what you can and we’ll keep you on the payroll.’ I tried to work, but it was difficult because it was getting harder and harder to take care of Rick.

“I had thought I’d be able to take care of him at home the whole time. I mean, I was still getting my paycheck, so I could be home all the time. The doctors were great. They told me everything I needed to know about Rick’s medications, and any time something happened that I wasn’t sure how to deal with, I’d call them and they’d help me through it.

“But then Rick started having seizures, and that was it. I couldn’t handle that. He’d try to get up and then he’d have a seizure and go crashing down to the floor. He’d have seizures in the bathroom …” Kerry trails off. “I couldn’t take care of him anymore, so we had to go into a hospice facility.

“Seeing him go out the door, knowing he’d never be back…I can’t even tell you what that was like. There were a lot of things we had known were ending along the way. Like the last time we had sex, we knew it was the last time. He was in so much pain, and we knew we wouldn’t be able to do that anymore. That was awful. But knowing he was leaving our home for the last time hit me harder than all the other things.”

“It felt horrible to take Rick to the hospice, but in the end, it was the right decision for us. He got excellent care, and I got a lot of support too. The doctors and nurses were great, and we also had really helpful social workers. Rick was in a Catholic facility, and there was one nun who looked after us who was just the best. She helped me so many times when I thought I was at the end of my rope.”

Rick’s doctors had expected him to live for only a few weeks after he entered the hospice, but he hung on for nearly two months. “He was in a coma by then, but his heart kept beating strongly. He surprised everybody,” Kerry says.

In Rick’s last moments, his parents, brothers, sisters and Kerry were in the room with him. Kerry says, “I was standing at the side of the bed, and we all knew this was probably the end. And suddenly, he pulled me close to him and kissed me. It was shocking and sad and pretty weird, because his whole family was standing right there. And then he died.”

Many options in end-of-life decisions
Nobody has to decide on their own what to do if it becomes necessary to make choices about end-of-life care. Doctors, nurses, social workers, clergy people and other professionals can help you and your family understand the kinds of care available to you, what your insurance covers and what kind of involvement is required of family members and other caregivers.

National Cancer Institute, American Cancer Society.
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