Until my husband David was admitted to Cedars-Sinai Medical Center in Beverly Hills, Calif., with advanced-stage pancreatic cancer, I knew little about the remarkable and long-lasting benefits of palliative care. Nor had I ever seen a palliative care team in action.
It was more than impressive. It put a human touch on dying. Palliative care is more than compassion. It’s mindful medicine at work.
When the palliative care physician first met with us, I told him that I associated his specialty with the “other word” — hospice.
“Hospice?" he said. "We won’t be talking about dying today."
I thought, You’d better not.
He continued, “We’ll be talking about quality of life for your husband’s serious illness. We’ll also be talking about what our palliative care team can do for you and your family. We’re here to help, day or night, and weekends, too.”
And they were.
We designed our own end-of-life plan that fit our family’s values and beliefs.
David was what some providers refer to as a "vitalist:" one of about 10 percent of patients who believe that any life at all is worth living. He fought to stay alive to his last breath. While his loved ones wanted to support him, his struggle was painful to watch. We needed all the support we could get.
I quickly learned that our palliative care team would be coordinated by clinicians who were board-certified in hospice and palliative medicine. These healthcare providers offered to help my husband and I design our own unique plan of care based on our goals, beliefs and family values.
The palliative care team respected David's wishes. They never tried to change his mind. Instead, they focused on increasing his comfort while supporting his loved ones (who, for the most part, accepted that the end was near). I took advantage of the counseling they offered and found it very helpful.
We also learned that engaging palliative care didn’t mean saying goodbye to our medical team. The program assists patients at all stages of disease. It doesn't preclude curative treatment, and the coordination it provides helps make care safer and more effective.
Palliative care teams are as much patient advocates as they are healthcare providers.
Palliative care is personalized according to the needs and preferences of the patient. In our case, this meant more human touch, more hugs and mindfulness work.
A palliative care team member sat on the bed next to David and chatted about family. He’d rest his hands on my husband's hands, massage his neck, prop up his pillows and joke around about little things.
When the team found out I was writing a book on creative conscious engagement, they asked me to teach them some techniques and incorporated these into our care.
One doctor told me, “It’s never going to be easy, but if we give our patients and their families more guidance, counseling and compassion with mindfulness, we can make what time is left a bit easier for everyone.”
Palliative care reduces healthcare costs and improves patient satisfaction.
Palliative medicine creates a win-win for everyone involved in healthcare.
On one hand, goal-directed end-of-life care saves America’s hospitals and healthcare systems money and resources through increased integration and the elimination of unwanted treatments and procedures. Meanwhile, patients and their families get more of what they want: comfort, compassion and care coordination.
Multiple studies have found that even though palliative care programs require additional staff and administrative resources, they ultimately reduce healthcare costs while increasing patient satisfaction. An often-cited 2010 study of patients with lung cancer found better quality of life and longer survival times in those who received palliative care.
So why don’t more hospitals and physicians educate families on the benefits of palliative care during critical illness?
Professional associations and health agencies encourage clinicians to counsel patients about palliative care. And yet, too few patients and families receive this help in a timely manner.
Even as someone who interacts professionally with healthcare professionals, I was unaware of the benefits of palliative care. Frankly, it was only through my own research that I became aware of the possibilities and sought it out for my husband.
Initially, my request was not met with too much eagerness on the part of his healthcare team. This was a shortcoming, in my opinion, when our family was exploring any and all options to help him meet his challenging end-of-life goals.
Novelty may contribute to the problem. Palliative care programs were nonexistent until the 1990s, and board certification in hospice and palliative care medicine has only been available since 2006.
The culture of healthcare may also pose barriers to palliative care. Being straightforward about death and dying is tough, even for professionals. Until recently, clinical training emphasized curative care almost exclusively, and few providers learned how to talk to patients about prognoses or goals of care. Some clinicians still view non-curative care as "failing the patient" or "giving up."
I observed this discomfort as my husband grew weaker and lost the ability to communicate. I sensed that many of the caregivers who were constantly in and out of his room saw only a dying man, not truly the man he was.
I knew I had to come up with a way to consciously re-engage the healthcare team around him. I spoke to the palliative care team, and with their encouragement, headed to a nearby Dollar Store …
Shifting the paradigm of medicine with one mindful act.
When David could still talk, his stories and life experiences had amazed his caregivers. They nicknamed him “Renaissance Man,” and the name had stuck throughout his 10-week stay.
Now, armed with poster paper, colored markers and clear tape, I created a big, colorful sign to hang above my husband’s bed:
"What you may want to know about my husband, David."
Underneath, I listed some of David’s accomplishments:
- A pilot
- An Auburn University alum
- A law school grad
- A trombone player in the symphony
- A published writer
- A professional photographer
- A veteran
- A husband
- A granddad
- A great-granddad
I also put up a sign with something he said before he lost lucidity:
“God is love, and I have been loved.”
Doctors, nurses, social workers, technicians and pretty much everyone else who came into the room just loved it. They asked if they could take pictures of the signs with their phones to send to their colleagues and the hospital social workers.
One doctor said, “You just put a face on a dying man. I want someone to do this for me one day.”
From that moment on, everything shifted in terms of how people engaged with David.
They no longer saw him as a dying patient but a man who had led a robust and full life. And I could tell he felt their engagement.
Palliative care isn't always a comfortable subject, but it's worth talking about.
Having just experienced its benefits first hand, I really encourage providers to talk to patients about their prognosis, goals of care and especially about resources like palliative care.
It's all right to be uncertain. It's all right to feel uncomfortable. Who looks forward to giving potentially upsetting news?
But in the end, talking to patients about palliative care can make a huge difference in their lives. It can restore their dignity and empower them to live the remainder of their lives on their own terms.
And that's why palliative care, which promotes quality of life through mindfulness, creativity, and compassion, is gaining widespread acceptance.
This column is dedicated to my husband David, who passed away with the assistance of palliative care on September 8, 2015.
About the Author
Anne Bruce has provided training and performance coaching for Vituity. She also serves as MBSI's Employee Development Coach and Leadership Facilitator. Anne is a bestselling author with more than 20 books published by McGraw-Hill Publishing, New York. Her next book on mindful behavior is titled Conscious Engagement and is scheduled for release in 2016. She considers her award-winning life-coaching book, Discover True North: A 4-Week Approach to Ignite Passion and Activate Potential (McGraw-Hill Publishing) to be one of her most "mindful" books to date. She also leads a popular Discover True North Expedition group on LinkedIn. Anne can be reached at 214-507-8242 or by writing to her at Anne@AnneBruce.com, or visiting her on LinkedIn or Facebook.
[Image credit: "120603-N-GI544-010" by Commander, U.S. 7th Fleet licensed under CC BY-SA 2.0, exposure adjusted]