When Care Meets Compassion: An Acute Care Leader’s Personal Journey

By Suzie Feuling, PCNOW Board of Directors

I have had the absolute honor of supporting several family members and family members of friends’ transition from the end of their disease process to death.  It’s a part of why I am so passionate about palliative and hospice care.  But I work in acute care healthcare – as a senior leader in patient safety and quality for hospitals and clinics, not hospice or palliative.  As a senior leader, I help staff and providers make care better and safer every day.  That is why we work in healthcare, and I am humbled and thankful to be able to support them.  There have been many studies on how Palliative and Hospice make care better and safer. If you search in Fast Facts, you will find many good articles – you can also find many good articles on Google.  So, why is it so hard for acute care providers to suggest a transition to palliative care and have goals of care conversations?  If we go back to our roots and our purpose of wanting to provide better and safer care, we can find the way.  With that, I have a story to share that illustrates just how important the role of acute care is in Palliative and Hospice care.

This story is personal…  I’d like to tell you about my father-in-law, who just passed away in March of 2025.  His name is Paul.  Paul had asked me to be his healthcare agent about 10 years ago after his wife died.  We discussed what he wanted “when his time came”.  He was very clear with me.  Time progressed and Paul suffered from heart and vascular disease and Parkinson’s disease.  After much heartache, he gave up the home where he and his wife raised their four sons and babysat for 14 grandchildren and moved to assisted living.  As Parkinson’s progressed, Paul had to give up driving, walking independently, and being able to care for himself independently.  He had multiple falls and multiple hospital stays and was dealing with hallucinations, dizziness, constipation, and back pain.  When the medications and treatments for his Parkinson’s were no longer effective, we had a conversation with his wonderful Neuro NP who helped him understand that it was time for supportive care.   

I broached the subject with his primary care provider (PCP) gingerly as I did not know what to expect.  I asked the PCP to take over all care – no more specialists – with a focus on palliation and symptom management.  We were fortunate that the PCP embraced supportive care and was willing to work with Paul on keeping him comfortable and safe. His Neuro specialist offered to support the PCP with questions and situations arose.   Paul had progressed to being basically wheelchair bound and mod to max assist for care.  The PCP, Paul, and I had routine conversations about what his goals were and how we could work together to keep him safe.  Goals were a difficult subject to talk about because it was hard for Paul to see the future.  Then Paul learned that his grandson was getting married and his grandson planned the wedding nearby so Paul could attend.  Paul shared with me that it was his goal to wear a suit with a bow tie and attend his grandson’s wedding.  The PCP was incredible in helping provide medical care to “pump Paul up” so he was alert and comfortable for the wedding.  He made it to the wedding; and was escorted down the aisle in his wheelchair with his granddaughter by his side.  Paul even stood (yes stood with much help) for a picture with the bride and groom wearing that suit and bow tie.  He enjoyed multiple conversations with people – he probably knew those would be his last conversations with many of those people.  

Within weeks after the wedding, Paul began to decompensate.  He knew that Christmas at our house would be his last and he told everyone how much he loved them.  After the first of the year, he quickly became mostly bedbound.  It was time to change from a palliative focus to a hospice focus.  He asked to see his priest and requested several sacraments including last rights.   He started telling people that he was dying.  He was at peace with dying.  We had the gift of being able to plan the end of his life and he was ready.  

Because acute care providers were willing to discuss palliative care and help create a plan that was focused on goals of care, we were able to keep Paul comfortable, out of the hospital, and safe.  Once we changed the focus, there were no more falls, no more trips to the emergency department, no more endless pills and therapists making him exercise when he was too tired.  Paul was in charge if he wanted to take medication or if he just wanted to eat ice cream instead and watch old Bugs Bunny cartoons.  The hardest part was the staff at the assisted living and family members thinking that we were “giving up”.  No, we weren’t giving up – we were celebrating a life well lived and supporting Paul to transition in the most comfortable way – honoring his wishes.  The wishes he shared with me more than 10 years ago.  We could not have done this without the willingness of our acute care providers to have the conversations and support Paul.   

Every acute care provider, in the hospital and the clinic, can think of a “Paul” they are caring for.  And I know that all of those acute care providers want to make care better and safer.  I encourage you, next time you see your “Paul”, to have the conversation.  You will make more of a difference than you will ever know.  And congratulations to PCNOW for 10 fabulous years supporting the kind of work that makes a difference to people like Paul and the acute care community.  And a special thanks to all of you for helping make our care safer and better every day.