Jamie H. Von Roenn, MD
Addressing the evolving needs of cancer survivors at various stages of their illness and care, Palliative Care in Oncology is guest edited by Jamie H. Von Roenn, MD. Dr. Von Roenn is ASCO’s Vice President of Education, Science, and Professional Development.
Research shows that although most Americans, about 80%, would prefer to die at home, only 20% actually do; 60% die in acute care hospitals, and 20% die in nursing homes.1 And although most patients with cancer want to be involved in decisions about their end-of-life care and a majority of patients want their physicians to initiate those discussions, fewer than 40% of patients with advanced cancer actually have these conversations.2 Communicating about end-of-life issues is an integral part of oncology practice, but many oncologists have difficulty delivering this information to patients and their families out of fear that such discussions would harm patients and/or undermine their hope. However, rather than cause patients distress, effectively communicating end-of-life options may actually result in less patient anxiety and better care at the end of life, more in keeping with patients’ values and goals.3
The development of goals-of-care video decision-support tools by multidisciplinary teams of experts—including oncologists, palliative care specialists, health literacy experts, and ethicists—is resulting in improving patients’ understanding of the risks and benefits of their end-of-life treatment options and empowering them to make more informed decisions about that care, studies have shown.
Angelo E. Volandes, MD, MPH, Associate Professor of Medicine at Massachusetts General Hospital/Harvard Medical School, and his colleagues conducted a randomized controlled study in patients with either a verbal narrative of goals-of-care options at the end of life or a video depicting three levels of medical care. The three levels of care were life-prolonging (such as cardiopulmonary resuscitation [CPR] and ventilation); basic care (hospitalization and no CPR); and comfort care (symptom relief alone). The
Part of the problem is we are not doing a good enough job of training oncologists and physicians, in general, in effective communication skills.— Angelo E. Volandes, MD, MPH
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investigators found that compared with participants who heard a verbal description alone, participants who viewed a goals-of-care video were more likely to prefer comfort care, to avoid CPR, and to be more certain of their end-of-life decision-making. In addition, patients seemed to be comfortable watching the video.4
This past October, Dr. Volandes gave the Keynote Lecture at the 2017 Palliative and Supportive Care in Oncology Symposium, cosponsored by ASCO, which addressed the misalignment in the health-care system between where patients want to die and where they do die. The ASCO Post talked with Dr. Volandes, author of The Conversation: A Revolutionary Plan for End-of-Life Care (Bloomsbury USA; reprint edition, January 5, 2016) and Cofounder and President of Advance Care Planning Decisions (www.acpdecisions.org), a nonprofit foundation, about how to align care that is commensurate with patients’ end-of-life care goals; how advances in oncology care, such as immunotherapy, are extending lives and complicating end-of-life discussions; and how visual decision-support tools can help ensure patients receive the care they want at the end of their lives.
Misalignment of Medical Care
During your Keynote Lecture at the 2017 Palliative and Supportive Care in Oncology Symposium, you talked about the misalignment of care patients want and the care they actually receive. Why is there such a misalignment in care, and how can physicians ensure their patients receive the care they want at the end of their lives?
We know that when patients are asked in surveys about where they want to die, almost universally the answer is at home, and I’ve been trying to understand why our delivery of health care doesn’t honor that wish. I think it is mostly because we, as physicians and, especially, as oncologists, are so focused on the latest and greatest treatment advance, such as immunotherapy, and the potential to extend patients’ lives that we are failing to simply ask patients with incurable cancer what is important to them. And once the momentum of these advances kicks in, we are all so focused on their potential we may lose sight of the patients’ voice.
Ultimately, I put this failure to initiate end-of-life conversations and to listen to patients on physicians. Part of the problem is we are not doing a good enough job of training oncologists and physicians, in general, in effective communication skills.
Postponing Difficult End-of-Life Discussions
Please talk more about how cutting-edge treatments such as immunotherapy encourage physicians—and patients—to postpone conversations about advance care planning.
Patients see advertisements on television and in magazines for drugs such as nivolumab (Opdivo), and they think they will work for them, even though immunotherapeutics is effective in only a minority of patients. So, these drugs add a layer of prognostic uncertainty, which further complicates and often delays discussions about what patients would like to happen at the end of their
I would have my patients make an advance care planning video and mail a copy to their loved ones and their oncologist.— Angelo E. Volandes, MD, MPH
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lives. What I tell colleagues is that at the end of the day, it is imperative to engage patients in these difficult conversations, and they aren’t just one-time discussions. I often say we can hope for the best and plan for the worst in light of these advances; hoping for a great response to immunotherapy does not preclude planning for the worst-case scenario.
Each time oncologists meet with their patients with advanced cancer they should ask them about their wishes for their end-of-life care, even if they are doing well at the moment. Oncologists should encourage their patients to talk about what is important to them if their treatment fails to give them the response they are hoping for; what brings them joy and happiness; and how they wish to spend the remainder of their lives.
Does the patient want to forgo multiple medical interventions that may offer little benefit and that may produce greater harm? Most patients when given this information choose quality of life over quantity of life and want to focus on each day being as good as possible.
Providing Care Patients Want
In your presentation, you talked about how giving patients unwanted care is a medical error. What do you mean by that?
Once terminally ill patients end up in the hospital, the momentum to stop life-prolonging interventions is difficult. We don’t have enough protections in the medical care system to ensure patients receive care that is consistent with their personal preferences. This misalignment of care is built into the American health-care system, and it is encouraged by a reimbursement structure that is based on a fee-for-service system rather than on a fee-for-value system, although that is changing. But I do think payers are starting to look at this misalignment of care and ask, “Was the delivery of care consistent with the patient’s wishes?”
What we are researching is how effective using visual media is in helping patients make better-informed decisions about their care as part of their advance care planning. We are video-taping patients so they can use their video as their advance directive. We want to see if the care patients say they want at the end of their lives is the care they actually receive.
These advance care videos are better than advance directive forms because it’s unclear whether patients understand what they are signing off on. We then want to have these short videos uploaded into patients’ electronic health records, so they become part of patients’ medical records, and then everyone on the medical team can see what the patient wants.
I would have my patients make an advance care planning video and mail a copy to their loved ones and their oncologist. We hope to make embedding these videos in patients’ electronic health records standard practice, so everyone understands how much care they want at the end of life.
Value of Visual Aids in Attaining Goals of Care
What is your research showing about the effectiveness and the value of using visual aids to explain goals of care, care in the intensive care unit, and hospice care in helping patients make better-informed decisions about their end-of-life care?
My colleagues and I have conducted nearly 20 clinical trials with over 5,000 patients with different diseases, including cancer, heart failure, and dementia, in both inpatient and outpatient settings, to assess the effectiveness of using videos to illustrate the medical conditions patients have and the treatment options they face. The evidence suggests these videos improve patient-centered care and help patients and physicians overcome communication barriers; give patients and their families a more realistic picture of their medical choices; lead to more informed choices; and enable patients to have more stable preferences for their end-of-life treatment over time.
What these videos do is level the playing field and put patients and their families in control of their health care.— Angelo E. Volandes, MD, MPH
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They provide patients with a compelling visual of procedures and outcomes that can be difficult to explain with words alone, and they are meant to be used in conjunction with one-on-one conversations with their oncologists. And although some oncologists fear that patients will be frightened by what they see, my response is that in the research setting, patients have never expressed fear after viewing these videos. And in the real-world setting, thousands of patients with a variety of diseases have seen these videos, and I haven’t heard of any negative reactions regarding their impact on patients.
What these videos do is level the playing field and put patients and their families in control of their health care. I know there are oncologists who are reluctant to talk about end-of-life care and who don’t have these conversations with their patients. And, unfortunately, what that usually means is patients don’t get to express their goals for their care.
These videos help break the ice and allow for shared decision-making. They are not meant, however, to persuade patients to opt for less-aggressive care; they are meant to help patients make the right choice for them based on being fully informed of the risks and benefits of undergoing life-sustaining medical interventions, including the use of feeding tubes, ventilators, and defibrillators, which often provide little benefit and may cause undo harm.
I get it: It is difficult to talk about these issues, but these videos make it so much easier to start the conversation.
Putting Patients First
How are video decision-making tools being used in the community setting?
It is difficult to track results on the use of these videos outside of research and outside of what is happening within the health-care system, but we have initiated two community-based programs to see how we can move the needle in the community setting. One is a statewide program in Hawaii; it allows every health-care provider free access to videos on end-of-life choices. The impact on patients was studied in a catchment area of 43,000 people, and it was found that hospital deaths decreased, physician orders for life-sustaining treatment completions increased, and hospice use doubled. In addition, Hawaii has also launched a statewide publicity campaign about the videos on television and radio and in magazines. And, I believe, over time we will start to see a cultural change in how patients use these visual aids to have more informed discussions with their oncologists.
The other program is in southern Arizona, where clinicians, social workers, caseworkers, and other health-care providers are using the videos in the clinic and in patients’ homes, and they are having a positive impact, especially among indigenous populations. We customize the videos to incorporate the preferred language and cultural sensitivities of the patients viewing the material to ensure they reflect the patients’ values. The project is still in the beginning stages, but the initial response has been quite positive.
Our goal with video decision-making support tools is to put the patient at the center of care. ■
DISCLOSURE: Dr. Volandes is cofounder and President of Advanced Care Planning Decisions, a nonprofit foundation offering video support tools to health professionals, patients, and families.
1. Stanford School of Medicine, Palliative Care: Where Do Americans Die? Available at https://palliative.stanford.edu/home-hospice-home-care-of-the-dying-patient/where-do-americans-die. Accessed April 4, 2018.
4. El-Jawahri A, Podgurski LM, Eichler AF, et al: Use of video to facilitate end-of-life discussions with patients with cancer: A randomized controlled trial. J Clin Oncol 28:305-310, 2010.