Reframing Hope with Palliative Care

Oct 7 11:36am | Angie Murad | @muradangie | Comments (3)

I educate patients and family members who are about to begin cancer-related treatment. Often people ask how will my body react to the treatment? How will I manage some of the symptoms of treatment? I often refer to the Palliative Care (pronounced pal-lee-uh-tiv) Consulting Service as a team of specially-trained team of doctors, nurses, social workers and other specialists who work together with a patient’s doctors to provide an extra layer of support. It is appropriate at any age and at any stage in a serious illness and can be provided along with curative treatment. The goal is to improve quality of life at any stage of cancer, regardless of active treatment.

Palliative care focuses on quality of life during treatment and beyond and includes management of:

  • Pain
  • Nausea
  • Fatigue
  • Nutritional needs
  • Emotional concerns
  • Spiritual concerns
  • Family and caregiver needs
  • Advanced care planning

Unfortunately, when the hope of curing cancer is no longer the goal the focus shifts to treating symptoms and keeping the cancer under control.

If you or a loved one has been diagnosed with an incurable cancer, you may be struggling with many decisions. You may have options to try new treatments if the first one is no longer working. You may consider stopping treatments and instead focus on improving the quality of your life without side effects from treatment.

You may be wrestling with guilty feelings for not trying any more treatment.  It may appear to others that you're giving up.  However, these decisions are individual choices. This is where hope needs to be reframed.

The choice to stop treatment and focus on living your life in the best way possible with the time you have remaining may be the new goal for your care.

If you or a loved one is in this situation, I hope you have heard of palliative care and hospice care. Both are meant to provide the patient and family with a focus on quality of life.

Research has shown that patients who receive palliative care report fewer symptoms, a better quality of life, and are more satisfied with their treatment plan.

Hospice care is provided to patients with more advanced disease and are expected to live six months or less.

As care transitions to the hospice model, palliative care continues with additional supportive care that likely won't include active cancer treatment.  When moving into hospice care, hope is reframed again with the goals of providing comfort, peace and quality of life during the last months, weeks and days of life.

My hope is that you are all living your life in the best way possible with good quality of life, a sense of meaning and purpose, and positive emotional and spiritual well-being.  If you are interested in learning more about palliative care and how it can help you, please have the conversation with your care provider.

To learn more about Palliative Care click this LINK or to read more conversations about palliative go HERE 

Resource: National Hospice and Palliative Care Organization

How have you or a loved one experienced palliative care?

 

Yes, my husband's duodenal adenocarcinoma was treated with 8 difficult infusions and 16 weeks of chemo pills with a lot of pain and suffering. Six months after treatment ended, the cancer had metsed to liver and pancreas. He had one of 4 prescribed 48 hour chemo infusion pump palliative treatments and decided he couldn't tolerate any more. He went on hospice right at the onset of covid in February 2020. He died at home May 20, 2020 under my care with hospice involvement daily. When he was first diagnosed and had a Whipple surgery, the surgical oncology nurse said then he didn't have to go through it meaning the chemo. She was brutally honest because although we gained time together ❤, it was a rough go and she was right although we opted to be hopeful and proceed with treatments. Horrible choices once we had the news of being terminal but grateful for hospice. We had both been long term hospice active volunteers and knew to sign up early for hospice. People often wait too long and miss the needed help and support.

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@tarmansbks

Yes, my husband's duodenal adenocarcinoma was treated with 8 difficult infusions and 16 weeks of chemo pills with a lot of pain and suffering. Six months after treatment ended, the cancer had metsed to liver and pancreas. He had one of 4 prescribed 48 hour chemo infusion pump palliative treatments and decided he couldn't tolerate any more. He went on hospice right at the onset of covid in February 2020. He died at home May 20, 2020 under my care with hospice involvement daily. When he was first diagnosed and had a Whipple surgery, the surgical oncology nurse said then he didn't have to go through it meaning the chemo. She was brutally honest because although we gained time together ❤, it was a rough go and she was right although we opted to be hopeful and proceed with treatments. Horrible choices once we had the news of being terminal but grateful for hospice. We had both been long term hospice active volunteers and knew to sign up early for hospice. People often wait too long and miss the needed help and support.

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@tarmansbks
Thank you for sharing your story and the beautiful picture of you and your husband. Although you feel like the choice to treat with chemo may not have been good, it was what you both felt was right at that time. I am so glad you were both able to get hospice care early to receive that help and support. Wishing you well!

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Thank you. We were poleaxed with the news after two rounds of clear tests. That and the stress of covid developing isolated us even more as we live in independent living in a CCRC and lock down started fast.

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