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How Video Support Tools Help Patients Make Informed Decisions About End-of-Life Care

A Conversation With Areej El-Jawahri, MD


Jamie H. Von Roenn, MD

Jamie H. Von Roenn, MD

Guest Editor

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 Senior Director of Education, Science and Professional Development Department.

A relatively recent study by Areej El-Jawahri, MD, and her colleagues is showing how the use of visual media can empower patients with advanced cancer, as well as other life-threatening illnesses, to make more informed decisions about their end-of-life care.1 The aim of Dr. El-Jawahri’s study was to evaluate the impact of a video decision support tool for cardiopulmonary resuscitation and intubation on patients’ preferences regarding these procedures and whether such a tool could improve physician-patient conversations on end-of-life care issues.

The study included 150 seriously ill hospitalized patients with an advanced illness, including metastatic cancer, heart failure, or chronic obstructive lung disease, and a prognosis of 1 year or less. The study participants were randomized to an intervention arm (N = 75), which included watching a 3-minute video describing cardiopulmonary resuscitation and intubation, plus verbal communication of their preferences with their physicians, or a control arm of usual care (N = 75), with verbal communication alone about these procedures.

The study’s findings showed that after watching the video, a large majority of patients were more likely not to want cardiopulmonary resuscitation (64% vs 32%) and intubation (72% vs 43%); were more likely to have orders in place to withhold cardiopulmonary resuscitation (57% vs 19%) and intubation (64% vs 19%); were better informed about their end-of-life care options (4.11 vs 2.45); and were more likely to discuss their preferences with their physician (82% vs 43%).

The ASCO Post talked with Dr. El-Jawahri, Instructor in Medicine at Harvard Medical School in Boston, about how video decision support aids encourage shared physician and patient decision-making and may lead to higher-quality medical care.

A More Accurate Picture

Please talk about the impact on patients of seeing visual images of cardiopulmonary resuscitation and intubation procedures vs having only a verbal description of these interventions.

For patients to make fully informed decisions about medical procedures, such as cardiopulmonary resuscitation or intubation, they need to fully understand the risks and benefits of these procedures and their potential complications. We know that verbal descriptions alone have a limited impact on patients’ understanding of these procedures, because they are presented with a hypothetical situation and it is difficult for them to imagine what takes place during these procedures. Having a video that shows exactly how these procedures are performed gives patients and their families an accurate presentation of what to expect.

Much of the public’s understanding of cardiopulmonary resuscitation and intubation likely comes from medical TV shows, in which patients are up and walking an hour afterward, but that is not what happens in real life. We are hoping these video aids give patients a more accurate image and perspective of what really takes place during these procedures.

Helping Patients Feel Part of the Process

Is patients’ lack of understanding about what happens during these procedures due to these conversations being rushed and clinicians not explaining these procedures in enough detail?

There are a few issues that need remedying. We know physicians often do not initiate or engage in these discussions, and when they do, the discussions are usually rushed. Part of the reason is because physicians are not sure whether the patient wants to talk about advance care planning. And when physicians do engage in these conversations, they often use a lot of medical jargon that patients don’t understand.


Having a visual aid allows patients to process what they are hearing and seeing, think about the implications, and then engage in a more meaningful discussion with their physicians.
— Areej El-Jawahri, MD

Having a visual aid, such as a video of a medical procedure that includes a verbal description of what is taking place, allows patients to process what they are hearing and seeing, think about the implications, and then engage in a more meaningful discussion with their physicians.

I strongly believe that video decision support tools should not replace the patient-physician interaction but rather supplement that communication. We want patients to make rational, informed decisions about their advance care and to feel empowered rather than scared to make a decision.

It is important to note that patients said they were at ease watching the videos. The overwhelming majority of patients randomized to the intervention video felt comfortable watching it, and 95% of patients said they would recommend it to other patients facing similar situations. So clearly they felt empowered to be part of this process.

Advance Care Planning

Did your study also investigate whether the video encouraged patients to sign an advance directive?

No, we did not look at advance care planning as part of this study. However, we recently published a study that investigated a video-assisted intervention and advance care planning checklist vs a verbal description for patients with heart disease.2 In that study, the intervention participants received a verbal description for goals of care and cardiopulmonary resuscitation/intubation and an advance care planning checklist. The control subjects received only a verbal description.

We were able to show that patients in the intervention group were more informed, more likely to select a focus of comfort rather than aggressive care, and less likely to want cardiopulmonary resuscitation/intubation compared with patients receiving the verbal information only.

We have not been able to investigate advance care planning and advance directives specifically, but they are the objectives of future studies.

Assessing the Value of Video Support

Is the use of video decision support tools becoming common in cancer centers?

We do not know, but it is an active area of research for us. Our hope is that by publishing more of these decision support tool studies and then taking the next step, which is an implementation trial to determine whether these decision support tools make a huge difference in both patient outcomes and in the care they want, as well as the effect on the health-care system because patients will be utilizing less expensive care, more oncologists will use these visual aids.

We are currently conducting a randomized controlled trial to assess the value of a video decision support tool for hospice care. Hospice is a topic that many of our patients with advanced cancer have to deal with at some point, but it’s a difficult discussion to have with patients and families. We are trying to understand whether this type of an early hospice education tool can help patients make more informed decisions about the type of end-of-life care they would like to receive.

Early Physician Support of Videos

How receptive are physicians to using this type of decision-making tool in the advance care setting?

Our experience so far in conducting these studies is that physicians have welcomed the use of video decision support tools in their conversations with patients and think it allows an important discussion to take place that otherwise might not happen. But this is all in the context of research. Obviously, we need to see how helpful these types of tools are once they are integrated into oncology practice, but so far, I have not found physicians to be resistant to the use of these videos.

Our main goal for this tool is to empower patients to be active participants in their clinical care, but we can imagine this technology may be utilized in other aspects of care. For example, I am a hematologist, and one of the difficult decisions our patients make is whether to have a bone marrow transplant and what the risks and benefits of that decision are. These videos could also be purely educational tools, and we are developing videos that focus on what life may be like for a patient after a bone marrow transplant. Such a tool would allow patients to be better informed about what to expect after the procedure and potentially raise questions to ask their oncologists.

You can take these technologic innovations as far as you want in terms of thinking of ways to encourage patients to become active participants in their health care at every point in their care and in every difficult decision they may face throughout their cancer trajectory. ■

Disclosure: Dr. El-Jawahri reported no potential conflicts of interest.

References

1. El-Jawahri A, Mitchell SL, Paasche-Orlow MK, et al: A randomized controlled trial of a CPR and intubation video decision support tool for hospitalized patients. J Gen Intern Med 30:1071-1080, 2015.

2. El-Jawahri A, Paasche-Orlow MK, Matlock D, et al: Randomized, controlled trial of an advance care planning video decision support tool for patients with advanced heart failure. Circulation 134:52-60, 2016.



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