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I’m no expert but…

Perspective on Hospice and Palliative CareMy perspective on hospice and palliative care

By Wanda Kelsey-Mendez, Communications Manager, Kansas City Hospice & Palliative Care

A few days before Christmas, the phone rang. “Hello, Auntie?” spoke my niece. “Tell me everything you know about hospice.” I took a deep breath. “Why?”

“It’s Dad. He’s been sick for a while now.” I realized my brother had not been in touch in quite some time. He was always a private person, but I’d usually see him at the family reunion or run into him out and about.

My mind flashed back to when I told him Mom was going into hospice at the Alzheimer’s facility. He was reluctant to visit and didn’t want to see her “like that.” “She wouldn’t know me anyway.” I told him that I wasn’t calling for her, but for him, to let him have whatever closure he needed. He didn’t come. Mom was in hospice for about six months. They helped the facility make her more comfortable and provided extra support that she needed. They called my sister daily to check on her and make sure she was doing okay. They were the cavalry rushing in to a hard situation and making it better. Mom died peacefully. I was so grateful.

Years later, I had the opportunity to come work for Kansas City Hospice. I jumped at the chance. I’m not a clinical person. I’m one of those people “behind the scenes” who help keep the organization running and doing whatever I can to explain hospice and palliative care. Working in Communications, I help design marketing and patient education pieces. I work with social media and the website. Sometimes I’m privileged to tell a family’s story.

What I did not expect was to become the “expert” for my extended family and friends. So many times in the past few years I’ve gotten a message, email or phone call. “The doctors are talking about palliative care. What does that mean?”

For my brother, it meant being able to stay at home with a palliative home health care nurse coming in to make sure his symptoms were under control. His ongoing treatment had left him short of breath, with little appetite and uncomfortable. The cancer doctor was trying to control the spread of the disease and knew it was going to be uncomfortable. The palliative team was there to help control the symptoms and improve his quality of life.

Having been warned that the treatment would have less effect over time, I was not surprised when my brother needed to go to the hospital and the oncologist ordered a hospice consult. My family asked me to be there. I had spoken to my brother many times about what he wanted and he was very clear that he was ready whenever it was his time, but he wanted to be comfortable. He was not comfortable. His breathing was labored, he couldn’t swallow much and he couldn’t find a comfortable position. He was miserable.

Dr. Pam came to us in the hospital room and explained what was happening and what options were available. Within an hour of her arrival, my brother was comfortable for the first time since entering the hospital. That same day, he transferred to Kansas City Hospice House™, where family and friends gathered. There was no pain, no suffering, only peace. Like many people in hospice, he passed in the early hours when most had gone home to rest and his son lay sleeping nearby. He was at rest.

 A few weeks later, a friend called. Her mother had been in the hospital and the doctors were ordering a palliative consultation. “I hate to ask, but could you be there?” she spoke softly. “Whatever you need,” I replied. A few days later, the family gathered at the bedside as she slipped away.hospice and palliative care

I get these calls so often. People find the words confusing and the concepts hard to grasp. Often their doctors are reluctant to explain much. Their job is to keep you alive, not help you to face the end of life in your own way. They might say palliative care when they really mean hospice.

What is palliative care? Palliative (pall-ee-uh-tiv) medicine is a large concept. It’s basically helping to control uncomfortable symptoms when someone is in treatment or facing the end of life. It’s about physical, mental and spiritual well-being for the person in treatment and for their family. It can be helpful for many years.

Hospice is a small part of that. There’s a common myth or misconception that hospice is for the last couple days of your life when you’ve “given up.” That could not be farther from the truth. Medicare and regular insurance want a doctor to say that it would not surprise them if their patient died within the next six months. That’s all. It’s not a death sentence, it’s just an assessment that it might happen.

Some people get better and leave hospice. In fact, many people do so well with the team approach provided by hospice that they actually live longer than expected. The problem is that our culture is uncomfortable talking about death. Even doctors are reluctant to have those difficult conversations. So, they might say “palliative care” just to get themselves off the hook and avoid saying that “H” word. Hospice and palliative care does not need to be scary, but so many people wonder, “what is hospice?

Recently a friend had been asking me for information for one of his other friends and then he said, “All my questions just turned personal.” His father was gravely ill and the doctor was talking about palliative care. He jumped on a plane and sent me more questions. A few days later, his father died peacefully with his family around him. He told me that hospice had been wonderful.

The person who hired me to be a part of Kansas City Hospice often spoke about the “true believers” in our organization, the ones who know hospice intimately from experience and believe in it with their whole heart. I’m a true believer. It’s been an honor to help tell our community about hospice and a privilege to learn enough to be helpful to my family and friends.

hospice and palliative careI honor my coworkers – the doctors, nurses, CNAs, social worker, chaplains and more – who are in the field every hour of every day, helping make a difference in the lives of our families, our friends and the community at large. I cannot do what they do. But, I can help. One of my coworkers often says “It’s an important job, it’s a job worth doing, and I can do it, so I do.” I agree.

Please educate yourself on hospice and palliative care. You never know when your family might need to make choices about end of life care and will need an “expert.”

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2 Comments on “I’m no expert but…”

  1. Francis Says:

    Thank you for sharing this. Our family has been touched by hospice many times, too. It seems like the family is always harder to convince than the person who needs hospice. The family doesn’t want them to “give up.” Maybe you have to experience hospice to understand what a positive experience it can be. It’s not giving up, it’s choosing to live the way you want to and to make each day the best it can be. To everyone involved in providing this wonderful service, let me say “thank you” from the bottom of my heart!

  2. Heather Fibuch-Townsend, RMSR Says:

    This was a fabulous article, thank you for sharing. Our family was blessed to have the support of Kansas City Hospice and Palliative Care when my grandmother passed away in March of 2014 at the Hospice house. After her passing my then physician father, began financially supporting the Palliative Care Fellowship Program and he found real comfort in supporting an organization that came to support him in his final weeks back in August of 2017. He passed away on August 20 of last year at the Hospice House with my by his side. If it wasn’t for the staff and all their comforting words and just being there for me, I never would have made it through. I was my father’s daughter and losing him was so incredibly hard, but the staff and counselors after after his passing made things so much easier for me. If it wasn’t for the childrens therapist, Denise, my kids would never have worked through my father’s death as well as they did. We are eternally grateful for Kansas City Hospice and Palliative Care for without this organization our family would have been lost getting through the months following my dad’s passing! Thank you for all your behind the scenes work, it makes a huge difference!

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There's a long list of hospices in Kansas City, but there's only one Kansas City Hospice. Our programs provide comprehensive expert care for all ages at all stages of serious illness.

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When symptoms cannot be easily managed at home, two hospice houses provide 24/7 expert care in comfortable home-line settings where family members can be relieved of caregiving duties to focus on loved ones.

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Carousel provides palliative and hospice care for perinatal and for babies through young adults with a dedicated team of pediatric nurses, social workers, chaplains and other specialists.

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Solace House

Our center for grief and healing supports individuals and families who have been impacted by the death of a loved one, whether anticipated, or sudden and unexpected. We provide opportunities to share, listen, learn and heal with peer group support from age 3 through adult.

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