It will take all sectors of our communities to move our nation from silence about dying to exploring the full range of emotions and issues that are associated with this last transition in our lives.
—Diana J. Mason, RN, PhD, FAAN
In 2014, the Institute of Medicine report Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life called for more conversations about improving care for those who are dying. Improving the care of the imminently dying is an important issue in the oncology community. To that end, the maturation of palliative care and geriatric oncology disciplines has markedly advanced the quality of outcomes for patients with late-stage cancer.
However, end-of-life care, from ethics to costs, remains a thorny topic in the ongoing health-care debate. To bring added perspective to this issue, The ASCO Post spoke with Diana J. Mason, RN, PhD, FAAN, former Editor-in-Chief of the American Journal of Nursing. Dr. Mason is also the co-editor of the award-winning book Policy and Politics in Nursing and Health Care. She writes and speaks about health policy and politics for national and international audiences.
Worn Many Hats
Please tell the readers a bit about your background and your current work.
I am a registered nurse. Over my career, I’ve been a clinician, researcher, administrator, educator, and a policy wonk. So I’ve worn numerous hats. I’m currently the Rudin Professor of Nursing and Co-Director of the Center for Health, Media, and Policy at Hunter College in New York. I’m also President of the American Academy of Nursing. My background has given me a broad-based perspective on the American health-care system.
You’ve written extensively and spoken in the media about raising awareness for end-of-life care. What experiences or influences got you involved in this work?
I’ve cared for patients who were dying, which has had a profound effect on me. However, it was a more personal story that accelerated my interest in end-of-life issues.
In the 1970s, I cared for my father for the last month of his life, and the experiences we had with the health-care system were pretty awful, and it had a lasting effect on me. The providers did not take into account my father’s wishes and goals. And they certainly didn’t ask or take into account our family’s well-being and wishes for my father’s end-of-life care.
When I was Editor-in-Chief of the American Journal of Nursing in the early 2000s, we were given a grant from the Robert Wood Johnson Foundation to do a series of papers on end-of-life care. I’m very proud of that series; recently, I spoke with a nurse who works in hospice care, and he told me that the articles had a profound effect on him. Moreover, he shared the pieces with his colleagues, and they essentially made changes in the way they practiced end-of-life care. Here we are in 2015, and end-of-life care is still a vital issue that needs constructive discussion that will lead to better care.
Breaking the Silence
The seminal 2014 Institute of Medicine report Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life stirred controversy in certain sectors that felt it was yet one more step in reducing expensive care for the dying for budgetary reasons. What is your reaction to the report?
The report doesn’t advocate that people with terminal conditions opt out of aggressive treatment. Rather, it calls for health professionals to ascertain the values, preferences, and goals of people with advanced illness and support them in making informed choices. However, it will take all sectors of our communities to move our nation from silence about dying to exploring the full range of emotions and issues that are associated with this last transition in our lives.
That said, improving end-of-life care for patients and families can also reduce costs, which the report makes clear, as patients opt for fewer aggressive treatments and avail themselves of palliative and hospice care.
Making Forward Progress
As we approach the next national election cycle, health care will certainly be a hot topic of debate. To that end, one of the most controversial parts of the Affordable Care Act was the Independent Payment Advisory Board (IPAB), which was infamously coined the “death panel.” What are your thoughts about the IPAB?
First off, the public, for the most part, does not have a clue about the IPAB, so scare tactics have an effect. I believe that during the past election, the death panel rhetoric was so harmful to the movement of providing choices and alternative-care options for those in end-of-life care that even those who opposed the IPAB and other like issues in the Affordable Care Act came to realize that in the end, it’s all about delivering high-quality care. So I believe that if that counterproductive rhetoric rears its head again, there will be considerable pushback by some conservatives.
Moreover, I think that there’s a consensus from both sides of the political spectrum that building conversations and educated decision-making into end-of-life care align with best medical practice. After all, that’s what everyone ultimately wants. We’ve come a long way, but there’s still much to do.
An example of our forward progress is the Choosing Wisely® campaign, which covers more than 70 specialty society partners, including the American Academy of Nursing. It is another example of the health-care community leading the way in promoting conversations between providers and patients informed by evidence-based recommendation that foster wise decisions about the most appropriate care based on a patient’s individual situation.
The Need for Honest Dialogue
Aside from the basic medical issues involved in treating patients with late-stage cancer, there are a host of other issues that affect quality of life for the patient and caregivers that often get overlooked. Any thoughts?
That’s correct. In fact, nurses in the field have shared such examples. For instance, patients who are dying of cancer are often urged by their families to undergo further experimental chemotherapies, even though their oncologists have said there is very little chance of extending their lives, irrespective of quality of life. As mentioned, this is where the hard discussions come in. And in the end, honest dialogue produces better care.
I would like to return to your other point about the complicated global issues surrounding end-of-life care. An advanced practice registered nurse associate of mine, whose husband has cancer, recently spoke with a lawyer who is an estate planner. At first, she was taken aback by the sheer volume of the forms related to end-of-life preferences. But it was a relief, because he brought up issues she never would have thought about. The point is that dealing with the issues around cancer and end-of-life preparations is more than medical decision-making; it takes a thorough, well-trained support system. And that is part of the overall discussion. ■
Disclosure: Dr. Mason reported no potential conflicts of interest.
The Affordable Care Act established a 15-member Independent Payment Advisory Board (IPAB) to reduce Medicare spending growth using a target system and fast-track legislative approval process. By April 30 of each year, the Centers for Medicare & Medicaid Services will project whether Medicare’s...