Category Archives: death and dying

Death and dying is the one subject no one wants to talk about, but we must. We need to think about how we want to live at the end of our lives; what’s important to us; what we value. And then we have to tell our loved ones and our medical team so they will know how to care for us if we cannot speak for ourselves.

An RN’s View From the Front Lines of Care

When her children were young, Theresa Brown, RN, made a mid-career change: from English professor at Tufts University to nursing, and chose to specialize in medical oncology. We should all be glad she did, because she has chronicled her experiences – and by extension, illuminated some of the most pressing issues and challenges in our health care system – in two excellent books as well as in personal essays in The New York Times. And she does it with clarity, insight, humor and understated eloquence.TheShiftcover

Her voice is important because nursing truly is the heart of care for the ill. No other health professionals spend as much time providing hands-on care for the sick than nurses. Our health care system is increasingly complex, technology-laden and hyper-specialized. So the need for a humanistic perspective from those who are on the front lines has never been more pressing.

I had the great pleasure of interviewing Theresa recently, following her book tour for The Shift: One Nurse, Twelve Hours, Four Patients’ Lives. The book focuses on a day in her life in the oncology ward of a Pittsburgh teaching hospital; she subsequently left that position and currently works as a hospice nurse, visiting people in their homes.

Just a couple of highlights of our conversation:

Theresa told me that she is comfortable in her current role as a home hospice nurse. In fact, she said, one reason she made this switch was that she always likes to learn new things and wanted particularly to learn about how the kind of care provided for patients at home might ultimately be transferred to the hospital setting. Care that offers more dignity and privacy for patients, such as letting patients sleep when they need to; or even wear their own clothes; and making it easier for family, friends and caregivers to visit any time and stay overnight if need be.

“It would be great to go back to a hospital and say, how can we make things better?” she said. “Creating a balance of comfort and quality care.” Even making the decision not to wake people in the middle of the night would be an enormous change, she pointed out.

We also talked about the ideal of the team approach in palliative and hospice care, where physicians and nurses work closely together in an atmosphere of mutual respect. (I’ve interviewed a number of such teams and, like proverbial married couples, they often do finish each other’s sentences.) In a hospital setting, Theresa noted, “communication between physicians and RNs often is not what it should be.”

She’d like to see more inter-professional training focusing on better communications so that “we could view each other as people and understand each other’s roles and responsibilities, and the pressures on each of us.”

There is no doubt in my mind that Theresa will keep learning – and educating us along the way – and that she’ll continue to make a difference in reaching the goal of improving patient care. In the meantime, you can order books, read her columns or join her mailing list at http://www.theresabrownrn.com.

 

 

 

 

 

 

 

 

Living Well to the End

Last Comforts

old-people-616718_1280Did 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.