After David Bowie lost his 18-month battle with liver cancer in 2016, Dr. Mark Taubert, a palliative care physician at Cardiff University School of Medicine in Wales, U.K., penned a post-mortem thank you letter to the music icon. The unusual correspondence expressed Taubert’s thanks not only for Bowie’s musical contributions, but also for his advanced care planning and his use of palliative care and pain management professionals. Taubert suggested to Bowie in the letter that if he “ever were to return (as Lazarus did), you would be a firm advocate for good palliative care training.”
End-of-life care is often associated with cancer treatment, yet it encompasses a host of diseases, from liver or heart failure to advanced COPD and Alzheimer’s. It is critical that end-of-life-care teams — oncologists, body imagers, neuroradiologists, radiation oncologists, and others — communicate with patients, their families, and one another to limit patient anxiety, pain, and unnecessary procedures, including unproductive imaging.
“When patients and their families are making these types of difficult choices — whether or not to continue to pursue care or to change treatment — it’s important that they have the information they need presented in a way that they can easily consume,” says ACR BOC Chair Geraldine B. McGinty, MD, MBA, FACR. “This goes to the heart of what we do, because oftentimes decisions are being made based on imaging.”
End-of-life care focuses on giving patients the best quality of life — providing comfort and pain management — while ultimately helping them die with dignity. Palliative care is used to treat patients who have a serious illness, for which a cure or a complete reversal of the disease is not possible. Hospice care focuses on maintaining quality of life for terminally ill patients receiving palliative care relief.
When a physician believes that treatment is unlikely to achieve the desired goal of care, treatment is considered futile. “The results of imaging studies help determine whether further treatment will be advantageous to the patient or provide no benefit, being essentially futile,” says James A. Junker, MD, FACR, chief medical officer at Mercy Hospital Jefferson in Crystal City, Mo.
Radiologists should gauge end-of-life care situations by pairing their expertise with the comfort level of patients and their families and the findings of other physicians providing care, Junker suggests. “If the patient’s primary physician, palliative physician, and the family want the radiologist to get involved in the discussion to assist with understanding an imaging study, there’s no reason not to play that invaluable role and help with decision-making,” he says.
Training for Empathy
According to Junker, radiologists can better contribute to end-of-life care if they have a desire to get involved and some training in how to communicate unfavorable news (learn more about communicating with patients and families on page 13). This can involve formal training or experience gained through participation. Radiologists who seize opportunities to work with palliative care physicians and hospice directors gain valuable insight, Junker says. His hospital holds meetings to discuss complex cases related to end-of-life care. Attendees include physician specialists, nursing staff, and often patients’ family members to discuss appropriate treatment or palliative care and hospice options.
“Radiologists can serve on or even start up these committees,” Junker says. “It can be time-consuming (and not all of the cases will be about specific radiological studies), but the knowledge gained from being a part of these interactions could be really beneficial to a radiologist when he or she is called to communicate results to family members.”
When radiologists are asked to speak with a patient or family member, a little empathy — even if it is learned — can go a long way. Personal encounters with life or death situations are especially powerful.
Junker, earlier in his career, had a close family member diagnosed with a near-fatal malignancy. The experience changed his perspective and he started getting more involved with oncology patients. “I had always been involved on some level,” he says, “but that experience changed my intensity level. I now feel like I have more knowledge of the pain and suffering that patients and their families go through.”
We need to change the culture of communication in our country to empower people to have honest, open talks with their loved ones and their physicians.
Starting New Conversations
Starting down a path to empathy can begin with an open conversation about end-of-life goals and palliative treatment — ideally before seeing a patient in grave condition. “It’s best to introduce the conversation in an outpatient setting when the patient isn’t feeling threatened or emotionally distressed,” says Alphonse H. Harding, MD, medical director of IR at Elkhart General Hospital in Indiana. It’s acceptable to ask patients if they have thought about such a situation, he says, and whether they have a plan in place.
These conversations should start with the young and the healthy, Harding insists. “We need to change the culture of communication in our country to empower people to have honest, open talks with their loved ones and their physicians,” Harding says. “IRs, for example, deal regularly with very difficult situations in which families have not thought things through. Patients find themselves making decisions in an acute setting rather than having dealt with it months or years before.”
Physicians, including radiologists, can practice a forward-thinking dialogue with those closest to them — their own families, colleagues, and other staff at work. “Start with your own family,” Harding says. “Ask them if they have advanced directives in place or if they’ve talked to their spouses if the worst happens.” Then you can approach nurses and physicians in your work setting, “Tell them you’ve had the conversation with your own family and suggest they do the same,” Harding says.
Providing Clear Interpretations
Broaching the subject of planning ahead won’t stop patients from getting sick. When the worst happens, the caregiving team must be committed to unambiguous and straightforward communication, providing the highest level of comfort and making ethical treatment recommendations.
“We shouldn’t be wishy washy in our reports if there is clear deterioration of a patient’s condition based on the imaging,” Harding says. “It is appropriate today — given that palliative care is now a dedicated specialty — to suggest a palliative consult in your report.” Radiologists who want to drive process improvements related to quality of life must be clear in what they present, he says.
It’s important that all caregivers involved help patients and their families understand their goals — and help them reach those goals within the realm of what’s realistic, says Seth A. Rosenthal, MD, FACR, chair of the ACR Commission on Radiation Oncology. Sharing imaging studies could foster a better understanding of the illness, he says, and possibly lead to a more constructive discussion between the patient, family, and the physician team.
“Sometimes a picture is worth a thousand words,” Rosenthal says. “And sometimes a picture may not truly capture the story and may be a distraction from the overall message of the care.” Guiding palliative care patients is ongoing for radiation oncologists, he notes, and sharing imaging studies should be based on the patient’s wishes, he says. “For some people it may be very important to see the images, and for others not. You have to read the patient and family to determine if they want you to interpret their studies to further the discussion of treatment options.”
Committing to the Process
According to Harding, helping patients come to terms with realistic goals is just as important as treatment. “If you see a patient in a palliative state that has no hope for recovery, you may have to raise treatment questions with the intensive care doctors and with the family,” Harding says.
You may decide to drain fluid from a patient’s chest so he or she can breathe more easily, Harding offers as an example. “But if the patient is in a coma and has multi-organ failure and you’re being asked to put in a gastronomy tube or dialysis catheter, it’s your role as a consulting specialist to ask the family, ‘Is this really what you want?’”
While any one person can raise the question, a group approach to end-of-life care decisions is critical. Bring in clergy if the patient or family makes a request, and include palliative care specialists to talk to whoever might be resistant to a change, Harding says. “We engage patients and families with a series of conversations about the ultimate goal of appropriately deescalating treatment, deescalating interventions, creating comfort, and allowing that patient to die with dignity.”
Radiologists may be reluctant to get too deeply involved in end-of-life-care discussions, Junker says. If you do have a desire to get involved in this area, he says, you should seek out your clinical colleagues. “Tell them you would be happy to help as a consultant and you’re willing to serve on an ethics or a complex care committee,” he suggests.
Participating in these types of committees will not only help radiologists relate more deeply to patients, but also strengthen relationships with other specialists and across departments. A better understanding of situations in which more imaging is unnecessary may also enhance a patient’s quality of life.
“If we as radiologists can be a useful part of the end-of-life-care process, then we’re doing what we should be doing — serving our patients,” says McGinty. “We’re also potentially making sure that families are making a choice that’s right for them, and that patients don’t get unnecessary care, but all the care they need.”