Lessons learned from one reporter’s immersion into end-of-life issues Date: 09/21/17
By JoAnn Mar
The End of Life radio series was made possible by the AHCJ fellowship program last year. My four-part series was broadcast in January on KALW, the public radio station where I am based in San Francisco.
I started reporting on death and dying 20 years ago and decided to revisit this topic following the death of my mother in 2015. Her death was (and still is) very much on my mind, and I thought that plunging into this new reporting project would help me process my grief and channel my energies into something useful.
I discovered that finding people and medical professionals willing to talk about the end of life is a lot easier now, compared with twenty years ago. Back then, it was much more challenging locating doctors outside of hospice who were interested and knowledgeable about death and dying. Today, the interest in palliative care has grown exponentially. Public discourse on the topi also has increased, and I find more people willing to talk openly about death and dying – there is less squeamishness and fear around this topic among these people. Unfortunately, this has not translated to increased planning and preparations for the end of life. Only a third of the population has created an advance directive and engaged in conversation about their advance care planning wishes. This is virtually unchanged from 10 years ago.
There remains a general fear around confronting death in our society (such as thinking and talking about the end of life), and there is no unified consensus or plan of action for educating or encouraging the public to jump-start these conversations. When prominent political figures rail about "death panels" (as they did during the ACA debate in 2009), progress around public education and end-of-life care is set back.
One of my biggest challenges was finding patients and families willing to open up about their experiences and share personal stories. Storytelling is popular among public radio listeners, and when stories are compelling, they can resonate deeply with listeners and humanize the dying process. Because of patient confidentiality rules, access to patients is not easy and takes time and patience. For example, I have been researching the use music at the end of life, including how more hospitals, hospices, and senior centers in the Bay Area are employing bedside musicians. It was easy finding musicians to talk about their work, but access to patients and their families was far more difficult, largely due to permission forms and HIPAA privacy restrictions. Several hospitals and one major hospice point blank told me “no.”
Many hospices and hospitals are doing great work around providing good care for their dying patients and deserve recognition. But if they are unduly restrictive about media access, they hurt their cause, and the public remains in the dark about end-of-life options. I understand their desire to protect patients and their privacy, but to automatically close the door without making an effort seems overly protective and, in the end, counterproductive. I think there's room for flexibility that would allow more press access while providing adequate patient safeguards and ensuring their privacy.
That being said, I did find physicians in the palliative care community who were wonderfully cooperative. They were generous with their time, and many shared their stories. I'm especially grateful to the folks at Zen Hospice in San Francisco who gave me access to their patients and some great leads. Two other medical institutions I want to single out are University of California, San Francisco and Gundersen Health System in LaCrosse, Wis. for giving me access to their staff, patients, and facilities. I also want to thank my AHCJ mentors Andrew Holtz and Ilene Wielawski who provided invaluable guidance, feedback, and direction during the fellowship year. Their sensitivity and support were greatly appreciated.
JoAnn Mar is a longtime reporter and now producer at KALW-San Francisco. She has worked as an attorney and an adjunct professor in broadcast journalism. As a 2016 AHCJ Reporting Fellow on Health Care Performance, she reported on the current state of end-of-life care for the terminally ill and whether anything had changed since a 1995 landmark study found that the majority of Americans tend to spend the end of their lives in pain and suffering.