King

Video Post: Advocate Marlene King Discusses Communicating End-of-Life Preferences and Quality of Life

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In 2008, Marlene King was diagnosed with ductal carcinoma. After treatment, the cancer seemed to be in remission, however in December 2011 the cancer returned in the same breast. She opted for a double mastectomy with expanders and implants. In late July 2012, she learned that her cancer had metastasized to her sternum, as well as a few spots on both lungs. The prognosis for life expectancy was 4-36 months. Marlene decided to connect with METAvivor and made it her priority to be an activist through the organization in raising awareness about the facts about metastatic (stage 4) breast cancer. In 2015, she joined us for a panel at the NCCS Cancer Policy Roundtable during which she offered a cancer survivor’s perspective on collaborative decision-making in cancer care and discussed the processes through which she communicated her end-of-life wishes with her physician and family. For many people like Marlene, the ability to make these decisions about care helps to alleviate concerns that family members will choose treatments to extend life at the cost of quality of life.

“I think a lot has to do with the person that is in the situation. That person has to make it very clear what it is that they want to have done. If not, then family members will come in and say ‘let’s fight a little harder.’ Well guess what? You’re not fighting this fight, I am. And I have the last say-so.”
Many people struggle with coordinating end-of-life care and preferences with family, friends, and physicians as advancements in medicine often leave people choosing between “survival at all costs” and other factors which may be more important to the patient—such as physical comfort or the ability to spend quality time with friends and family. The public discourse surrounding the need for conversations about end-of-life choices has been amplified in recent years. In winter of 2015, Dr. Atul Gwande’s stirring FRONTLINE report, “Being Mortal” (based on Gawande’s book, Being Mortal: Medicine and What Matters in the End) allowed viewers an intensely intimate look into the lives of individuals facing decisions about end-of-life care. Columnist Ellen Goodman recently wrote an opinion piece in The New York Times calling for more Americans to have discussions with their families and loved ones about their wishes. The Centers for Medicare & Medicaid Services (CMS) also recently announced plans to support Medicare beneficiaries by reimbursing doctors for advance care planning beginning in January 2016. The proposed codes would reimburse for discussions about an individual’s wishes, should he or she become too ill to make decisions, and for the completion of an advance directive.

Video Transcript:
Once I learned that I was Metastatic, I made sure that my doctors understood exactly how I felt about once there’s nothing else that can be done, do not keep putting me on medication just to say you’re trying to see if it’s going to work. If there’s nothing else that can be done, there’s nothing else that can be done. Let me move on and let me go with my family and my friends and enjoy what little time I have left. I have had the discussion with my husband. It’s very difficult for him.

I have also had the discussion with all three of my sons. I’ve had the discussion with my sister, and I’ve had the discussion with my brother. So when the time comes, everyone understands exactly where I stand and what I want to happen. So then, no one will start beating up on each other about trying to make, or to help me survive a little longer.

The same thing happened with my Mom. My Mom wanted quality of life and not quantity. And when it was time, and she was dying, we had her at home in hospice. We had the grandchildren to come and visit. We had the brothers and sisters and everyone to come and visit. We had the friends to come and visit. Every now and then, we had a big party. But we all understood that we were not going to do anything above and beyond until she takes her last breath. And that’s what she did.

I think a lot has to do with the person that is in the situation. That person has to make it very clear what it is that they want to have done. If not, then family members will come in and say ‘let’s fight a little harder.’ Well guess what? You’re not fighting this fight, I am. And I have the last say-so.

About the Contributor:
Marlene King was diagnosed with Ductal Carcinoma in Situ (DCIS) in 2008 at the age of 48; at which time, she elected to have a lumpectomy, chemotherapy and radiation. After treatments the cancer seemed to be in remission. In 2011, the cancer returned and she decided it would be best to have a double mastectomy and reconstructive surgery. However, one year later in 2012, Marlene was diagnosed with stage 4 metastatic breast cancer; the prognosis for life expectancy 4-36 months. During this time, Marlene decided to connect with METAvivor and eventually made it her priority to be an activist through the organization in raising awareness about the facts about metastatic (stage 4) breast cancer. She is currently a member of the METAvivor Board of Directors. METAvivor exists to sustain hope for those living with metastatic breast cancer.

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