We really need to give our outpatients palliative care

Once upon a time, I was a newspaper journalist: I chased down sources and sweated over deadlines. Then, in mid-career, I switched to doing marketing and communications for a regional healthcare system. This consisted of a large hospital and many outpatient clinics, including a community cancer center.

Because I handled communications work for the cancer center, I also had a seat on the cancer committee — an oversight group of oncologists, pathologists, nurses and other specialists, who met quarterly.

I found these gatherings a bit intimidating. My fellow members were welcoming, but they spoke almost entirely in acronyms and medical jargon–”OCNs,” “PET/CTs,” “staging,” “linear accelerators.”

So I kept quiet, trying to preserve a professional demeanor. The only time I spoke was when reading my community-outreach report describing the services we offered to patients, families and the larger community.

A few years into this job, I walked into the cancer committee meeting feeling rather surreal.

Just weeks before, my father, suffering from intense back pain, had visited a local emergency room. They’d discovered a large mass near his kidney.

A biopsy had revealed it to be a leiomyosarcoma, a rare form of muscle cancer. The tumor was entwined with vital organs, and my father’s underlying health issues made surgery impossible.

Seeking other treatments, Dad’s doctors had sent him to this very cancer center. Here, only a week or two back, I’d sat with my parents as a radiation oncologist gently broke the news: this was not a cancer Dad would likely overcome.

“Radiation may give you some time, but it won’t get rid of the cancer,” the doctor said quietly. “There’s no way to say how much time you have … I tell people this is the time to take the trip you’ve always dreamed of or do the things you’ve always wanted to do. If you decide on radiation treatment, there are no guarantees. Everyone is different. We just don’t know … I’m sorry.”

He’d encouraged us to seek hospice care.

“I’m not ready for that,” Dad told him. “I’m not ready to die.”

The rest of the meeting was a blur.

Now here I sat in the cancer committee meeting, gazing around at my fellow members.

Suddenly it hit me: these were top-of-the-line medical professionals, with all kinds of advanced degrees and credentials–yet despite their extraordinary skills, none of them could do a thing to save Dad.

I wanted to cry out for someone, anyone, to fix my father’s cancer. Sitting there while they delivered their reports, I tried to keep my composure – I’m supposed to be a professional! But inside, I felt utterly helpless and alone.

Afterwards, a nurse named Connie approached me.

The previous year, she’d developed a new palliative-care program for inpatients, and I had helped create the educational materials for their families. We’d agreed at the time that it would be great to do something similar for outpatients.

How ironic, I reflected. My own family now needs that program.

“How are things going?” Connie asked.

I burst into tears.

Through gulps and sobs, I told her about Dad. “How can it be that, in a room full of so many bright medical minds, no one can help him?”

“Sometimes there just aren’t any answers,” Connie said, putting her arm around me. “There will be good days and bad days for your dad and your family, but you know I’ll be there for you.”

I realized that she’d said these words to countless others, but still they gave me great comfort. Hearing them, I felt hopeful that our family would get through this, and that Dad would be able to retain his dignity. Most of all, I felt deeply supported in this time of desperate need.

Many times over the next three months, as my father fought hard against his cancer and my mother and I worked together on coordinating his care and keeping him comfortable at home, I remembered Connie’s words. Each time, I felt anew how crucial it was for patients and their families to have that kind of support.

When Dad became very debilitated, and home care was no longer an option, he agreed to go into hospice. (In fact, when I contacted hospice I learned that he’d called the previous day to set things in motion.) He spent his final days in the hospice house, receiving wonderful care until his death.

A month passed. It was time for the next cancer committee meeting.

My emotions were still raw — but this time, I wanted to speak up. I rehearsed the words in my mind, and when the time came, I said them.

“Some families fall through the cracks when they get a cancer diagnosis, like my Dad did. We need to develop an outpatient palliative-care program for families like mine. We need to give them the help they need, from the time they receive a cancer diagnosis through the final outcome, whatever that might be.”

My voice cracked, but I repeated: “We really need to give our outpatients palliative care, just like we do our inpatients.”

Around the table, I saw people nodding in agreement. Not long after, the committee agenda featured a new item: “Development of an outpatient palliative-care program.”

Seeing the words, I felt elated. The grief and helplessness I’d felt throughout my father’s final months had empowered me to speak out, and my words would help to make a difference to others — they wouldn’t need to go it alone like we did.

Thanks to much hard work and dedication by all involved, our outpatient palliative-care program is now a reality. More than two years old, it has provided consults for over 200 patients — helping them to set goals for how they want to live out their lives, assisting them with symptom management and offering them emotional and spiritual support.

The journey with cancer can be lonely and scary, but I’ve learned that, with programs like ours, it doesn’t have to be. For me, identifying the need for this program, and helping to create and promote it, has felt like coming full circle — journeying through pain and sadness and then, at last, finding my way back to a place of support and empowerment.

Anita Fry works in health care communications. This piece was originally published in Pulse — voices from the heart of medicine, and is reprinted with permission. 

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  • Bruce Scott

    Many palliative docs would love to have outpatient programs.
    Many primary care docs and specialists would like to be able to refer.
    However, outpatient palliative care programs lose money under the current system. You need a bigger team to run a program well than you do in a primary care office…but you make less money. Sometimes a lot less money.

    You are most likely to find outpatient palliative programs attached to Hospice and Palliative Medicine fellowship programs, but that is largely due to the accrediting requirements. (Or in the VA system.)

    It’s very challenging to be an outpatient palliative doctor sometimes. There are (well-intentioned, but poorly-thought-out) prescribing restrictions in place in many places that eat up a lot of time and money (without the intended benefit).

    And you will find other doctors (even some published on this site), who will accuse you of homicide. Not a lot of fun there.

    • GT

      If a doctor, under the guise of “palliative care”, is going to dose up a patient with narcotics until they are unconscious, and then once they’re unconscious keep doping them with more and more sub-lingual opioids until they are dead, well that’s not “palliative care”.

      You actually can keep a patient comfortable without murdering them, you know. And if you don’t know that, well then I don’t want you anywhere near me should I ever request palliative care.

  • Rachel Phillips

    Wow this article is so pertinent. There is a huge difference between hospice and palliative care, emotionally, regarding treatment goals and reimbursement. I’ve worked with patients who do not want hospice even if they only have weeks or a few months to live but Medicare’s reimbursements only cover home hospice not palliative care. If patients can opt for home hospice and then decide at any time they do not want to continue with hospice to return to “full, aggressive treatment” (and they can) then we need to stop with the semantics and require like reimbursement for palliative care. Although the general public thinks that people should just accept their terminal diagnosis and “give up” , there are many of us who want to go out fighting (I would be one of them). And because conservation of healthcare resources/costs are an issue… palliative care is actually a solution as expensive curative treatments are replaced by lower cost treatments that will sustain one’s health and comfort until “if and when” the time comes. That one word makes a big difference regarding choice and dignity. Thank you Anita for sharing your article.

    Here is an excerpt from: Palliative Care An Opportunity for Medicare
    http://www.capc.org/capc-resources/capc_publications/pc-medicare.pdf‎

    “Patients who are expected to die within six months are candidates for
    hospice, as defined by Medicare. The group of patients who could benefit from palliative care is broader, but not as precisely defined. In general,experts in the field focus on two overlapping groups of patients: the chronically sick with conditions such as heart or lung disease who are expected to survive more than a few years, and the actively dying,whose anticipated life expectancy is measured in days or weeks. Medicare currently pays for palliative care services per se only within the hospice benefit. In order for care to be reimbursed under this benefit, patients must acknowledge they have been informed of their life-limiting condition and consent to receive services directed toward the alleviation of suffering and support in life closure rather than those directed towards cure. In addition, in order to be eligible for the Medicare hospice benefit, patients must have a prognosis of six months or less. Over time, the regulations imposed on the hospice benefit have contributed to narrowed access to services and have made innovation within the average hospice program difficult.”

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