Foreword

In 1977 I began my life’s work as a nurse, first on an oncology unit and just a few years later venturing into home care, where I would be a part of starting the first hospice care program in my state. At that time, the idea of hospice was no more than a dream based on the stories I had heard about St. Christopher’s Hospice in the United Kingdom. It was a dream worth pursuing, as I knew, as a young nurse in what were also the early days of oncology, that my patients deserved this care. It is care that encompasses a commitment to the whole person, pain relief, a team approach, family caregiver care, and spiritual care. It is important to note that at this time the term “palliative care” did not yet exist in our vocabulary. The values we now consider as our bedrock were only vague descriptions of a cultural change rippling from across the ocean.

Ten years later, in 1987, I relocated to California, and soon after I heard that the “Mother” of the hospice movement, Dame Cicely Saunders, was visiting San Diego and would be lecturing. I was the first person in line for the event. I sat mesmerized as Dame Cicely spoke of the lessons she had learned in building this new system of care, which was challenging virtually every tenet of healthcare systems and what was important to dying patients and families. My best memory of that day came in the time for questions following her lecture. There were a series of questions from attendees, and each of the questions was focused on the more existential aspects of hospice care—time of death, spiritual care, and grief. Dame Cicely answered each question from an audience hungry to understand this revolution in care and how each of us could be a part of its growth in America.

After patiently responding to all of the deep questions, and as the lecture came toward its end, Dame Cicely spoke very deliberately to the audience with her closing thoughts. She acknowledged that all the questions related to hospice care were important, and added, “Your patients want not only your compassion, but your competence.” She reminded the audience that our work was not only to deliver this new philosophy of care based on compassion but also to develop a workforce and system of care that would ensure competence. Our hearts were necessary but so were our brains, and our commitment to build systems of care that would deliver consistent, quality care.

I left that lecture changed, and in the 35 years since, I have not forgotten those words—compassion and competence. This fourth edition of Hospice and Palliative Care Handbook: Quality, Compliance, and Reimbursement is a response to that very challenge in a world that has changed remarkedly over these past decades. It begins with acknowledging the COVID-19 pandemic and its impact on the world—a world that has now been forced to view death en masse, and a world that has also seen what palliative care can do for the needs of the seriously ill with both acute and chronic illnesses. This book is a perfect blend of compassion and competence that addresses the core values of care, the interdisciplinary team, self-care of staff, and the needs of an aging society. It also addresses the issues that are necessary to sustain the field, such as quality improvements, unique needs of various disease groups, and the very real need to comply with regulations and standards of care.

Everyone involved in hospice brings their gifts. Chaplains, nurses, physicians, volunteers, social workers, and every member of the care team come together to weave their gifts into a great quilt of support that has spread around the world as care we now recognize as hospice and palliative care. We are a part of a great community and privileged to provide this care. Tina Marrelli’s gift over many years has been to put the compassionate work and the competence needed into words so that others can learn of this sacred work.

During a time of great challenges and change, what a gift this fourth edition will be to the field. Dame Cicely would be very proud.