Surprisingly, many people do not know what palliative care is despite its great strides in recent years. A Consumer Reports survey of more than 2,000 adults, for example, showed that 61 percent had never heard of palliative care.
As the population ages and the demand for palliative care grows, the ability to assess quality throughout the country and across care settings is increasingly important, as Dr. Joseph Rotella, chief medical officer of the American Academy of Hospice and Palliative Medicine (AAHPM) and co-chair of its Measuring What Matters Clinical User Panel explained. And because there has been “no consistency regarding which measures are required by various groups, from accrediting organizations to payers,” AAHPM and the Hospice and Palliative Nurses Association (HPNA) came up with “measuring what matters” quality indicators.
Moreover, he said, “there has not been enough focus on cultural sensitivity and social supports. The quality indicators represent a small set of measures to use right now in hospice and palliative care because they are meaningful to patients and have a real impact on them.”
These measures are not mandatory. But if you are seriously ill, or taking care of someone who is, this is the kind of care you should look for. The measures call for:
- A comprehensive assessment (physical, psychological, social, spiritual and functional) soon after admission.
- Screening for pain, shortness of breath, nausea and constipation during the admission visit.
- If you screen positive for at least moderate pain, you should receive treatment (medication or other) within 24 hours.
- Patients with advanced or life-threatening illness should be screened for shortness of breath and, if positive, to at least a moderate degree, have a plan to manage it.
- Engaging in a documented discussion regarding emotional needs.
- Hospice patients should have a documented discussion of spiritual concerns or preference not to discuss them.
- Documentation of the surrogate decision-maker’s name (such as the person who has health care power of attorney) and contact information, or absence of a surrogate.
- Documentation of your preferences for life-sustaining treatments.
- Vulnerable elders with documented preferences to withhold or withdraw life-sustaining treatments should have their preferences followed.
- You or your family or your caregivers should be asked about your experience of care using a relevant survey.
Did you know that November is National Hospice and Palliative Care Month? It is, thanks to the efforts of the National Hospice and Palliative Care Organization. It’s a month devoted to broadening public awareness about the outstanding and much-needed care that hospice organizations provide for the very ill and their caregivers.
So I thought I’d do my part. I’m excited to announce the upcoming publication of my book, “Last Comforts: Notes From the Forefront of Late-Life Care.” Why did I write this book and start this blog?
I was drawn to hospice care because its caring and profoundly respectful philosophy and practice offers physical and emotional comfort, support and kindness to the dying and their families. My family experienced that first-hand with my mother’s last illness, a stark contrast five years after my father’s more conventional medicalized, nightmarish last months. So when I had an opportunity to sign on for hospice volunteer training at Holy Name Medical Center, I took it.
“Last Comforts” was born when one nagging question kept arising early in my journey as a hospice volunteer. Why were people coming into hospice care so late in the course of their illness? That question led to many others that rippled out beyond hospice care. Are there better alternatives to conventional skilled nursing home operations? How are physicians and nurses educated about advanced illness and end-of-life care? What are more effective ways of providing dementia care? What are the unique challenges of minority and LGBT people? What is the role of popular media in our death-denying culture? What has been the impact of public policy decisions about palliative and hospice care?
The book is part memoir of lessons learned throughout my experiences with patients and families as a hospice volunteer; part reporting about the remarkable pathfinders and programs in palliative and late-life care; and part call to action. I encourage readers – particularly her fellow baby boomers — not only to make their wishes and goals clear to friends and family, but also to become advocates for better care in the broader community.
It’s no secret that care at the end of people’s lives right now is mostly fragmented, uncoordinated, often futile and unsustainable. But without question, it can be managed far better for those who are ill as well as for their caregivers. I’m hoping that “Last Comforts” – and this blog — will help shed light on how we can help make that happen.