Maintaining bond with patients crucial after cancer-directed treatments are no longer beneficial
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It’s the news no patient with cancer wants to hear: There’s nothing more we can do for you.
“It’s such a horrible phrase,” Amy R. MacKenzie, MD, associate professor in the department of medical oncology at Sidney Kimmel Cancer Center at Jefferson Health with supplemental training and board certification in geriatrics, said in an interview with Healio | HemOnc Today. “As trainees, we see this type of talk modeled: ‘The chemotherapy isn’t working, so it’s time to get your affairs in order.’ I don’t think many of us are adequately prepared to say, ‘The chemotherapy isn’t working, so let’s talk about what we can do to support you during this time.’ There is a positive spin that we often don’t see. There’s always something we can do.”
Source: NYU Langone Health.
Through various victories, uncertainties and setbacks of cancer treatment, the patient and oncologist often form a close partnership and trust. As difficult as it can be to tell a patient that curative treatments have ceased to be helpful, experts in palliative care maintain that the conversation should not mark the end of that relationship.
“I think it would be great if oncologists were trained to accompany patients through the whole course of the illness, including the end of it,” Diane E. Meier, MD, vice chair for public policy, professor of geriatrics and palliative medicine, and Catherine Gaisman professor of medical ethics at Icahn School of Medicine at Mount Sinai, as well as a HemOnc Today Editorial Board Member, said in an interview with Healio | HemOnc Today. “I know everyone is drowning in work and overextended. On the other hand, we could prioritize maintaining the continuity of the oncologist/patient relationship. We could measure and incentivize it, and train oncologists on how to meet the needs of people who are no longer benefiting from cancer-directed therapies. Everyone eventually comes to a point at which our disease-directed treatments are no longer beneficial. Yet this is the moment when the relationship with the oncologist is most important to the patient. Why would we turn our backs on them at that very stressful point in the illness?”
Healio | HemOnc Today spoke with oncologists and palliative care physicians about ways to approach conversations with patients after curative treatments have ceased to be beneficial, assist patients and families in making the transition to palliative care, and maintain the patient-oncologist relationship.
Communication strategies
The SPIKES protocol is one established method for clinicians to broach conversations with patients. Originally designed for use in the oncology setting and published as a six-step protocol in 2000, SPIKES stands for:
- Setting: Choosing a private, comfortable setting where the clinician and patient can talk without interruption. Setting can also pertain to family members the patient would like to have present.
- Perception: Asking the patient how they perceive their condition and the status of their disease.
- Invitation (or Information): Asking the patient if it is OK to talk about the status of their illness. This empowers patients and gives them a sense of control.
- Knowledge: Providing a summary of what the clinician knew before, what they hoped for, and what they have learned. Clinicians should speak slowly in short sentences, make eye contact and avoid medical jargon.
- Empathy: Listening with empathy as the patient responds emotionally and acknowledging their feelings with compassion.
- Summarize (or Strategize): Summarizing what has been said and formulating a plan, with feedback from and collaboration with the patient. Clinicians should ask the patient if what they just said makes sense and invite additional questions.
Establishing good communication with a patient as early as possible will make the conversation easier for everyone, according to Declan Walsh, MD, chair of the department of supportive oncology at Levine Cancer Institute and a HemOnc Today Editorial Board Member.
“I think we’ve become better at that because of better training for physicians in general, and oncologists in particular, in these communication techniques,” Walsh told Healio | HemOnc Today. “So, if you have good communication established, it’s much easier to raise issues around what the patient wants in terms of their care when treatments are no longer working.”
Discussing standard legal documents earlier in a patient’s treatment can be a first step toward introducing end-of-life concepts, Walsh said.
“I had this very conversation yesterday with someone who has a bad disease, but they’re currently feeling quite well and concerned about what the future holds,” he said. “Establishing advance directives and power of attorney for health care (surrogate or proxy decision maker) is an important part of the process and can be a mechanism to open up the larger conversation, because it’s a neutral thing. Everybody should have power of attorney, and everyone should have a living will. When you start that conversation, it naturally can lead into questions about other aspects of care as people approach the end of life.”
Walsh said it is important to emphasize the positive message — and even at the end of life, there can be a positive message.
“We can tell them that we may be in a very difficult situation with the illness, but that everyone on the team is going to work hard to provide them with the best care,” he said. “Although we may not be able to offer them a cure, there are still lots of things that can be done to ensure that they will be well looked after, that their needs are going to be attended to and that their quality of life is going to be a priority. They aren’t going to be abandoned.”
Making the shift
It can be difficult for an oncologist, whose mission is to treat cancer, to shift gears from trying the next cutting-edge treatment to helping the patient maintain quality-of-life and comfort as disease progresses.
Meier said patients often already have an idea that their condition has taken a turn for the worse, either by reviewing their scans in patient portals or simply by how they feel.
“We call that the ‘warning shot,’ and it’s important,” Meier said. “Some colleagues I’ve known just continue to administer treatments that aren’t working, and it’s a sort of avoidance or denial. The patient knows they’re getting worse, but the doctor keeps saying, ‘Oh, we’ll try another round.’ And the patient is thinking, ‘Am I crazy? Why is the doctor saying everything is OK when I can feel that it’s not?’”
Oncologists’ reluctance to make this shift from disease-focused treatment to whole-person care and non-abandonment can lead to delays in highly effective palliative care and in achieving the patient’s wishes about how they want to spend their remaining time.
MacKenzie said physicians generally are not well-trained in this regard.
“In medical school, we get a little bit of training — students will work with a standardized patient — but in residency, you’re thrown into it without a lot of supervision,” she said. “So, that’s one barrier to having the conversation in a timely manner. I think another barrier is the idea of being seen as not being able to ‘fix’ something and feeling like a failure. The whole ‘battle’ analogy — like when we say, ‘Mom’s a fighter’ — falsely sets up palliative care as a sort of defeat.”
Reframing palliative care
Misconceptions of palliative care abound among patients with cancer, according to research.
A study by Formagini and colleagues, published in January in JCO Oncology Practice, showed factors such as prognostic uncertainty, confusion about the role of palliative care, and social network influence perpetuated a stigmatizing association of palliative care with end of life.
Patients and their families may also view hospice care as “giving up the fight.”
Explaining to a patient that palliative care is delivered at the same time as all other cancer treatments as an added layer of support focused on achieving the best possible quality of life can help patients make the transition, Walsh said.
“There are many more palliative medicine services in cancer centers now compared with when I was starting out,” Walsh said. “At our institution in Charlotte, we’re developing a new supportive oncology department that has taken palliative medicine concepts and expanded them to include things like rehabilitation, integrative oncology, nutrition and more.”
The movement away from associating palliative care with death has improved how people die, according to Meier, who described the “palliative medicine paradox” in a paper published in 2009 in Journal of Palliative Medicine. The paradox, identified by her then-colleague Sharyn Sutton, PhD, holds that minimizing palliative care’s connection with death and dying increases the chances that patients will attain a good death, Meier wrote.
“The impact of this shift in frame for the palliative care field is obvious — palliative care programs have doubled in numbers in the last 5 years and, confirming Sharyn’s prediction, hospice referrals have increased even faster.”
Although the shift toward palliative care can improve a patient’s chance of living as well as possible for as long as possible with their illness, when the patient develops steady functional decline — losing ability to care for themselves — it is time to consider a transition to hospice care, Meier said. Hospice can be delivered in any setting, but most of it is delivered at home under the Medicare hospice benefit. Depending on availability and willingness of family or other caregivers, home hospice care is not realistic for everyone.
“There are a huge number of variables that go into location of death, and preference is only one,” she said. “In many ways, preference is the least important in terms of driving what actually happens. Often, patients are so sick that home is not realistic. Going home with hospice care, many people — including clinicians — are not aware that 99.9% of the care is delivered by family members. Hospice staff come in for a few hours a week, but the 24/7 care — the turning and repositioning, the bathing and administration of medications for suffering, the cleaning and washing, shortness of breath and agitation — is handled by the family. Remember, the family did not go to nursing school or medical school.”
Ensuring clarity
Another important aspect of the conversation after cancer-directed treatment no longer confers benefit is ensuring the patient and their family have understood the oncologist’s message, which should be delivered clearly and with empathy, Meier said.
“This is where we side with the patient’s wish that we had another treatment that would help them,” she said. “We might say ‘I wish there were something else we could do to cure your cancer, but the reality is, the treatments I have are more likely to shorten your life.’”
Clinicians must also understand that time and/or additional conversation in the future might be needed for the patient and their family to fully process the information, Meier added.
“It may take a while for people to adjust or come to term with the news,” she said. “We’ve all heard the stories of people who were in a motorcycle or diving accident and paralyzed from the neck down. The first week, they just want to die, they want to be taken off the ventilator. Then a year later, they’re happy to be alive.”
She said even when facing death, patients often adapt to a life that they could not have anticipated tolerating when they were well.
“Humans are remarkably resilient. They’re able to adjust to new realities, and we physicians have to be willing to weather that period of time where there is grief and anger,” Meier said. “Then you have to say, ‘I can’t imagine how upsetting this must be, and I really wish it were different.’ The goal is to show empathy, but without agreeing to additional treatments that could potentially harm the patient.”
Family members of terminally ill patients can be more challenging, MacKenzie said. Families intent on continuing to “fight” often leave patients with a difficult dilemma.
“Patients then feel pigeonholed. They think, ‘Well, I have two choices. I’m either going to fight this or I’m going to give up,’” she said. “Sometimes families insist that they are going to fight. You want to be able to say, ‘I know you are a fighter, but let’s figure out what we’re fighting for. If the disease can’t be cured, then we want to put that energy into another goal, such as living as well as possible for as long as possible. What are the important things you want to fight for?’”
Pediatric discussions: Difficult on many levels
Some of the most difficult conversations are those involving patients whose lives are ending much too soon.
Christine A. Zawistowski, MD, is present for many of these conversations. She said the innately tragic nature of childhood death is worsened by heightened expectations in pediatric oncology.
“Oncologists care deeply for their patients, and great strides have been made in curing many childhood cancers,” Zawistowski, a pediatric palliative care and intensive care physician at NYU Langone Medical Center and clinical associate professor in the department of pediatrics at NYU Grossman School of Medicine, as well as a HemOnc Today Editorial Board Member, said in an interview with Healio | HemOnc Today. “Lately, there has been more focus on survivorship, late effects and comorbidities. This is not the kind of conversation they are expecting to need to have.”
For example, Zawistowski has been working with an oncologist and researcher whose pediatric patient with T-cell acute lymphoblastic leukemia has experienced a very unusual complication.
“He isn’t able to treat this young man’s cancer, and it’s really throwing him off, because he should have had a 90% cure rate,” Zawistowski said. “He’s having such a hard time with it, because he’s always been the person to take care of these patients from start to finish, and he’s seen such improvements in treatment over the course of his career.”
This is where Zawistowski and her pediatric palliative care team come in.
At many institutions, palliative care teams can assist oncologists in navigating various aspects of conversations with patients after curative treatments are no longer beneficial.
“Generally, we have one of two scenarios," Zawistowski said. “We’re invited to come in with the oncologist and the oncologist is generally able to break the news. If they’re not, they look to us, and we can clarify by saying something like, ‘Unfortunately, what your oncology doctor is saying is that your child’s cancer has returned and there are no good treatments. That’s why we’re here to work together to figure out how to support you and your child.’”
Sometimes, Zawistowski said, the child is also present for the conversation, usually after the situation has been fully explained to the parents. Zawistowski said this is very dependent on the family’s preferences.
“Some parents unfortunately try to shield their child from this, thinking their child doesn’t know,” she said. “The child always knows. Some parents are very open with their children, and have the child participate and discuss what is important to them. Most of them want to go to school; they just want to be a regular kid. So, we support them in that. We say, ‘We’re going to do everything we can to help you go back to school and make sure your school knows what’s going on.’”
Given the large Orthodox Jewish population served by her hospital, Zawistowksi said she and her colleagues are sometimes told by parents that they need to discuss the issue with the family’s rabbi. She said these interactions vary based on the rabbi.
“It can be very frustrating, because in our country, the parents have the right to determine these issues for their child, rather than delegating to someone else,” she said. “You have to bring it back to the knowledge that these parents have to live with these decisions for the rest of their lives. So, we need to take away our personal feelings about their choices, such as withholding information from the child, or deferring a decision to their rabbi. We’re not allowing them to do anything harmful to their child. It just may not the be choice we would make.”
An ongoing conversation
The most important aspect of the conversation is that it continues after the decision to stop disease treatment, Meier said.
“Many oncologists don’t realize that when a patient is referred to hospice and the family is able to manage the care at home, every patient still has a doctor,” she said. “It can be the hospice medical director, but it can also be the patient’s oncologist or primary care doctor. Usually for a patient with cancer, their closest relationship, their highest level of trust and connection is with their oncologist. Maintaining that relationship is very powerful, not just for the patient, but for the oncologist, as well.”
This can be as simple as calling the patient once a week to see how they are doing. Meier said.
“Oncologists care deeply about their patients, and it’s very important to all clinicians, and especially oncologists, not to abandon their patients,” she said. “Unfortunately, the training of oncologists does not include these other ways to be there for the patient other than administering disease treatment.”
She said a greater prioritization of communication and oncologist-patient relationships is something that could be addressed without much difficulty.
“That is something that is actionable,” Meier said. “If, for example, the Accreditation Council on Graduate Medical Education for oncology programs starts to require that trainees demonstrate essential communications skills to qualify, that would make a big difference. There are all sorts of things that we require in physician training. The fact that communication skills training is not required is a big part of our problem.”
- References:
- Formagini T, et al. JCO Oncol Pract. 2022;doi:10.1200/OP.21.00088.
- Kaplan M. Clin J Oncol Nurs. 2010;doi:10.1188/10.CJON-514-516.
- Meier D. J Palliative Med. 2009;doi:10.1089/jpm.2009.9644.
- For more information:
- Amy R. MacKenzie, MD, can be reached at Thomas Jefferson University, 2701 Holme Ave., Suite 302, Philadelphia, PA 19152; email: dramack@gmail.com.
- Diane E. Meier, MD, can be reached at Mount Sinai Hospital, 1440 Madison Ave., New York, NY 10029; email: diane.meier@mssm.edu.
- Declan Walsh, MD, can be reached at Levine Cancer Institute, 1021 Morehead Medical Drive, Charlotte, NC 28204; email: declan.walsh@atriumhealth.org.
- Christine A. Zawistowski, MD, can be reached at NYU Langone Medical Center, 462 First Ave., New York, NY 10016; email: christine.zawistowski@nyulangone.org.
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