The positive effects of palliative care on quality of life

“I’ve been a fighter all my life,” said my new patient, a middle aged man with thinning hair, a worried wife, and a dismal prognosis. He had  worked all his life as a plumber with no health insurance.  When he was healthy, it was okay.  But now he was sick.

I was meeting him for the first time in the community health center where I work as a family physician, tending to all the health needs of a community, from birth to grave. One week earlier, he had gone to the local community hospital when he could no longer swallow.  The emergency room doctors admitted him for a complete workup.  Inside the hospital they found a tumor in his esophagus, and two in his lungs, one in each lobe of his liver, as well as in his adrenal glands.

Metastatic cancer, spread throughout his body.

The private oncologist who covered the for-profit community hospital where he had received his diagnosis would not see a man in his office who had no insurance. The oncologist directed the patient to me, expecting me to make urgent appointments with the oncologists at Cook County Hospital, Chicago’s county-financed public safety net system for the uninsured. They would provide top quality care, but it takes months for appointments to make it through the referral system, even when they are marked urgent.

“The oncologist told me you would help me,” he said.

“I’m sorry, I can’t get you in any sooner than the private oncologist could,” I apologized.  I advised him to obtain his records from the for-profit hospital when the pathology results came in the next day, and bring them to the County Hospital emergency room to be seen (the only way I know of in Chicago for patients without health insurance to receive timely cancer care).

“What’ll they do for me, doc?” my new patient asked.

“You’ll see the cancer doctor right away,” I told him.  “You’ll start the care you need right away.  Working with the oncologist, you’ll figure out your best options.  You can fight the cancer as hard as you can, focusing on trying to beat it back, no matter how miserable it makes you feel.  Or you can accept the cancer, and focus on living as comfortably as possible for as long as possible.”

“I’m a fighter, doc,” he said.

“We’ll begin by fighting the health system to make sure you get the care you need.”

The patient needed a regular doctor, a cancer doctor, and, I realized, but was afraid to say, a palliative care doctor, working together to help minimize the effects of the cancer and help him feel better as the end of his life neared.  Instead, he was uninsured in a malfunctioning health system, in a society that confuses offering palliative care with giving up on life.

Research published in the New England Journal of Medicine in August 2010 showed that palliative care, alongside standard cancer treatments, improves the quality of life, prevents depression, and helps patients live longer.  Physicians led by Dr. Jennifer Temel at Massachusetts General Hospital studied 151 patients newly diagnosed with the aggressive non-small-cell lung cancer, already in a metastatic stage. Half the patients received standard cancer care. The other half received standard care plus early palliative care services, designed to manage symptoms, provide psychological and social support, and help assist patients with difficult end-of-life decision making.

Since palliative care takes as its goal making patients feel better, it includes standard treatments, since they start off making patients feel better. Sometimes standard treatments, especially at the end of life, make patients feel worse.  Then, if the patient chooses, palliative care doesn’t use them.

The researchers wanted to find out what the difference was in quality of life and mood between the patients who received standard care and the patients who received early palliative services. They talked to the patients at twelve weeks, and then later they checked medical records to see how long people in each group lived.

They found that of the 86% of patients in both groups who lived to 12 weeks, those with early palliative services had a significantly higher quality of life. About half as many palliative care patients had depressive symptoms as the patients in the standard care group (16% instead of 36%).

Most surprisingly, contradicting popular perception of palliative and hospice care as a death sentence—palliative care patients lived longer. Even though fewer patients in the early palliative care group than in the standard care group received aggressive end-of-life care (33% vs. 54%), more people lived longer among patients receiving early palliative care (with a median survival of 11.6 months vs. 8.9 months).

The results of Dr. Temel’s study showing the positive effects of palliative care on quality of life, mood and survival, made me wish I had phrased the options for my patient with newly diagnosed cancer differently.  I wish I had said, “You could fight to live as comfortably as possible for as long as possible.”

Then he could have accepted palliative care while still maintaining the idea of himself as a fighter.  He could have fought for the palliative care that would make him feel better and live longer, at the same time he battled the broken American medical system to obtain his standard cancer care.

I wish I had felt comfortable discussing palliative care with the patient, without feeling like he would think I was handing him a death sentence.  Training—and paying—doctors to talk comfortably with patients about end-of-life options would improve the coordination of end-of-life care to meet patient needs and goals.

Months after seeing the plumber, I received a report from an oncologist at the county hospital detailing the patient’s treatment plan.  I called his home to see how he was doing.

His wife answered.

“He died in five months ago,” she told me.

“I’m so sorry,” I said, sad but not surprised. “What happened?”

“He did two rounds of chemo fine, then got sick as a dog,” she said.  “He was in the intensive care unit for weeks, intubated in a coma as his body fought off multiple infections.  Doctors said his immune system was weakened by the chemotherapy.  Then his organs shut down, one by one, until he couldn’t take no more.

“He fought it to the end,” his widow said.  “He suffered so.”

Kohar Jones is a family physician who blogs at Progress Notes.

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  • Kate Murphy

    It seems wrong that we equate fighting with suffering.  Much better to fight against suffering, and it can be done.

    • Laura Boehringer

      Kate I see what you are saying. I had a very short personal experience with a Palliative care unit at our local hospital.  For us, it was obvious that my grandma’s time was short. She had lived a long fulfilling life. They did make my grandma comfortable,and they were there beside her when she passed. I think she gave up on life when she lost my grandpa. They had been married almost 65 years.
      On the other side of that is my grandfather (my grandma’s husband) who they thought would be gone within six weeks and was put on hospice, only to live for another year.  I think in the past people being put on hospice was considered a death sentence…but in my situation, I got to have my grandfather around for another year. They lived alone and I think having someone coming in to check on him at home is what kept him going. The only thing with my grandpa, I never knew if he was suffering, I always assumed he was because of his physical and mental condition. In the end I think he was fighting to stay with my grandma and his family.  It does help to have a good support group. 

      • Anonymous

        In my experience too, hospice care was a blessing for life, rather than a death sentence.  My grandmother was put on hospice, and lived another two years–the improved nursing support and volunteers helped her and my grandfather manage her chronic illness and daily living effectively.  Only after she was taken off hospice and lost the close medical management did she, sadly, die.  My personal experience, as well as the experiences of my patients, makes me appreciate hospice care deeply as a means to improve patient quality and length of life. Now I just need to learn to comfortably translate that to my patients.

  • Sharon Barnett

    I am so pleased to see we are speaking out about the true blessings of pallative care.
          After being a nurse for twenty four years palliative care has become my true cause in life.
          Far to many people pass without its benefit or support. Having sat at the bedside of many I can tell you death is not ugly. It does not have to be painful.We do not have to go unprepared. Our families do not have to suffer alone.
         In my case Im lucky, my family and friends know what I want. I have a open honest relationship with my physcian

    My only reget is in not knowing this eigthteen years ago when I lost my mother

  • Anonymous

    Take a BIG Gold Star for phoning – not an easy thing to do, but it will have meant so much

  • Mary Ford Biel

    I absolutely agree that new doctors need more compassion training and training about how to talk to patients and families about end-of-life care and options. Nurses could probably use a little more training as well.
    Great article! I hope that you can find a way, in this wacky medical system, to develop a program that will help patients and relieve fear for the patient and their families! I am in Chicago and have my Health Care Leadership degree with 8 years of medical experience if you want an assistant!!
    I can’t wait to read more of your things!

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