Discussions about prognosis, goals of care (GOC), and end-of-life (EOL) decisions are integral to the specialty of palliative care, especially for patients with cancer. Oncologist referral to the palliative care consult team (PCCT) in the early stages of a patient’s disease opens the door to address not only EOL issues but also pain relief, physical problems, and psychosocial issues patients and their caregivers face and is now considered standard of care. However, oncologists are still reluctant to make referrals to the PCCT until their patients are in the late stages of disease. When the PCCT becomes involved only in the later stages of illness, this propagates the myth that palliative care equals EOL care—a death sentence. Later involvement of the PCCT also eclipses the fact that patients who receive early palliative care concurrently with their oncology care experience a better quality of life throughout the trajectory of their illness; in short, it is a missed opportunity. This case report explores the optimal role and involvement of each service in the discussion of EOL issues with a patient with serious illness. The literature suggests that a collaborative approach between the primary oncologist and the PCCT is the best strategy, with the goal of treating, educating, and supporting patients, caregivers, and other practitioners on all the options for care across all stages of disease.
The WHO defines palliative care as
an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention of and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.1
Its purpose is neither to hasten nor to postpone death but, instead, to provide pain relief and to integrate the psychological and spiritual aspects of patient care.1
Although data still conflict, studies suggest that early initiation of palliative care can decrease hospital admissions and improve patients’ quality of life. Early in 2017, ASCO issued clinical care guidelines that recommend early referral of patients with cancer to palliative care at or soon after the time of diagnosis.2
Discussions about prognosis, GOC, and facilitation of EOL decisions are integral to the specialty of palliative care, especially with regard to patients with cancer. These discussions, however, are often best had after a clinician establishes a trusting relationship with a patient. The literature suggests that many, if not the majority, of palliative care referrals are made in the end stages of a patient’s illness3
and that patients and caregivers would prefer earlier referral for palliative care with the belief that palliative care would lessen suffering and improve symptom management.4
The timing of palliative care referral serves as a springboard for discussion about the primary oncology team and PCCT’s respective roles in patient care and poses the question about how these specialties can collaborate to meet the medical, symptomatic, psychosocial, and spiritual needs of the patient and caregivers.
Mrs J was a 62-year-old woman with a 13-year history of relapsing Waldenström macroglobulinemia treated with chemotherapy and autologous stem-cell transplant who experienced a transformation of her disease to diffuse large B-cell lymphoma in 2015 with recurrence and progression < 100 days after a bone marrow transplant. The disease had metastasized to her left gluteal region and left-side iliac inguinal nodes and caused pain and the inability to ambulate. She was admitted to the hospital for treatment of cytomegalovirus viremia with intravenous foscarnet and transferred to the intensive care unit as a result of angioedema.
On day 25 of her admission, the patient’s oncologist requested a palliative care consult to discuss GOC. On initial presentation, Mrs J’s Eastern Cooperative Oncology Group performance score was 4, and her Karnofsky performance status was 30%. She had medical decision-making capacity but was unsure of her prognosis. She was tired, frustrated at being in the hospital, and eager to go home. Her goal was to get strong enough to continue her primary cancer treatment.
The patient had a long, trusting relationship with her primary oncologist and was unfamiliar with the members of the PCCT. Pursuant to the consult, the PCCT requested a family meeting with the primary oncologist and the patient and her husband. The purpose of the meeting was to discuss Mrs J’s prognosis and GOC and to initiate the idea of an advance directive. The palliative attending clinician sent an e-mail to the leukemia team to inquire about the patient’s prognosis and future course of treatment and to request that the oncology attending come to the meeting. The oncology attending sent the following reply:
Hi Dr Palliative,
1. Prognosis is very poor. I would estimate there is a 90% chance it is less than 6 months, regardless of future intervention.
2. She is getting palliative radiation therapy at this time. However, she will require systemic therapy to achieve disease control. She could not receive true salvage chemotherapy due to the pancytopenias and poor performance status (the radiation unfortunately will make the cytopenias worse but is needed for pain control). If disease control can be achieved, and if the graft has not been rejected, she could be a candidate for donor lymphocyte infusion or, given that she may not be strong enough for this, an unrelated allogenic transplant.
3. I can meet with you all as well—I spent a good deal of time with both the patient and her husband (with whom I’ve discussed all this already but he may not have retained it all), BUT I would prefer that you address the DNR [do not resuscitate]/DNI [do not intubate] question without me present. I would not ask you if you were not already involved, but since you are already involved, I would appreciate it if you could bring up the MOLST [medical orders for life-sustaining treatment] form. Medically, I agree that she ought to be DNR/DNI, but of course, she should make an informed decision. I would prefer she not get the idea (wrongly) that I am “giving up on her” as her oncologist, especially since I have every intention of moving her through the aggressive treatment plan outlined above (along with her lymphoma [physician]), BUT again, the DNR/DNI question is now looming, and I’d be remiss if I ignored it.
I don’t think her husband will be surprised to hear the topic of this meeting.
I appreciate your help greatly!
A family meeting was held without the oncologist. Mrs J had never been referred to a palliative specialist and had never discussed GOC or an advanced directive. She had not met any member of the PCCT and was unwilling to speak with the team about her prognosis or advanced directive; thus, she did not believe a need existed for the PCCT to remain involved in her care despite her severe pain and declining functional status. The PCCT invited the patient to be seen in the clinic as an outpatient and signed off the case.
Discussion: How Could Care Have Been Improved?
Several opportunities for earlier intervention over the course of Mrs J’s illness presented themselves that have led to a better outcome. The first opportunity was the option to refer her for palliative care earlier. The patient would have had the chance to build a trusting relationship with the PCCT; access to clinicians, social workers, and chaplains; and perhaps psychosocial support for her family. The symptom and pain relief that she received may well have paved the way for productive EOL discussions and would have made the transition from aggressive, chemotherapy-based treatment to symptom management treatment and maintenance of quality of life less abrupt. In addition, the continuity of care may have mitigated her perception that treatment was being withdrawn and that her oncologist was giving up.
A survey that explored hematologists’ attitudes toward palliative care referral revealed that a significant percentage of hematologists are reluctant to refer to palliative care.5
More than solid tumor oncologists, hematologists tend to delay palliative care referrals because of psychological barriers, such as a perception that a referral represents a failure to cure and a mistrust of others to properly care for their patient. Hematologists are more likely to see a palliative referral as only EOL care rather than as an extra layer of support focused on quality of life, symptom management, and a holistic approach to the disease.5
The survey also found that hematologists believed it appropriate to treat hematologic malignancies more aggressively at EOL and that these aggressive treatments could better control the disease. Finally, the hematologists believed that PCCTs lack knowledge about the intricacies of hematologic malignancies and need education.6
In essence, hematologists believe that a PCCT referral may harm their patient.
Another survey assessed patient attitudes toward palliative care to explore the reasons for underuse.7
Most patients believed that palliative care was beneficial and could “make you feel better.” However, they were only generally aware of palliative care and believed that palliative care only was offered when nothing more could be done. These patients also rated comfort and dignity higher than life-prolonging treatment. Hope was a sentinel theme wherein more than one half of the patients surveyed reported that a discussion about death can make people lose hope and that “losing hope makes people die sooner.”7
This finding is in line with the literature that reports that clinicians are reluctant to refer to palliative care because they are afraid of destroying hope.8
However, other studies have shown that although patients hope for a cure and long life, they also want a peaceful death9
surrounded by loved ones. Another study reported that in patients with congestive heart failure, clinicians were uncertain about who should initiate an EOL discussion, and almost one third of clinicians reported low or very low confidence in having these discussions.8
Another study found that nearly one third of clinicians reported stress at having to break bad news to patients,10
which concords with the aforementioned oncologist surveys.
Although prognostication, the discussion of GOC, and the facilitation of EOL decisions are integral to palliative care, PCCTs often become frustrated when their expertise is sought late in the patient’s illness, especially if it is to deliver bad news, communicate a poor prognosis, or obtain a DNR order. They may believe that this interaction contributes to heightened patient or family anxiety and suffering, especially if the patient is acutely ill, frightened, and has no prior rapport or experience with the PCCT. This dynamic also propagates the myth that palliative care is synonymous with EOL and withdrawal of treatment rather than a supportive specialty with a team-based, interdisciplinary approach to symptom management throughout the entire course of the disease. Early referral, as recommended by ASCO,2
gives the PCCT the opportunity to develop a trusting bond with the patient during the course of the illness, facilitates frank discussion before the crisis hits (ie, when the patient is less vulnerable), improves patient-centered care at the EOL, and gives the patient and family the chance to prepare for and facilitate a comfortable and dignified death.
Another opportunity to improve care for Mrs J was to have the oncologist or a member of her team be present for the family meeting. If death were not imminent, the PCCT could have postponed the meeting to have a conversation with the oncologist about why her presence would put the patient at ease. Before the rescheduled meeting, the PCCT could have continued to focus on the patient’s symptom management and given social support to gain her trust and build rapport as well as to ease her anxiety. When the oncologist is willing to give chemotherapy and hope but relies on the PCCT to discuss the withdrawal of treatment and transition to EOL care, the patient likely will perceive that the PCCT is withdrawing care, giving up, and squashing hope. In essence, chemotherapy equals life; DNR/DNI and those who discuss it equal death.11
The patient perceived the two teams as antithetical—a choice between life and death—and not as two medical specialties with the goal of helping to improve and extend her life. The result was a missed opportunity to provide a more holistic standard-of-care approach to a patient with advanced illness and to alleviate some of her physical and psychological suffering.
Candid discussions of prognosis, GOC, advanced directives, and transition to EOL care are essential to palliative medicine, which elevate it from a specialty to an art. The oncologist’s collaboration with the PCCT in these discussions is appropriate and commendable as well as standard of care.2
What is the optimal role and involvement of each service, and who should deliver bad news and discuss EOL issues with a patient with advancing illness? The oncologist was correct to involve palliative care, but how can both teams collaborate on a patient-centered approach rather than perpetuate an antithetical dichotomy?
Are Discussions About a Patient’s Estimated Prognosis Beneficial, or Do They Cause Harm?
A meta-analysis of the communication of prognosis to patients with cancer showed that patients believe that their clinician does not candidly discuss prognosis. For any communication that did occur, whether it was by the oncologist or the PCCT is unclear. The findings suggested, however, that many patients with late-stage cancer were unaware of their prognosis.12
Another survey of physicians found that clinicians felt that they routinely tell their patients that they will die as a result of their illness. The clinicians indicated that they only communicate this prognosis when patients express a preference for it, and in so doing, the clinicians do not give an estimated time frame. Furthermore, the majority of the clinicians surveyed reported that they were inadequately trained to discuss prognosis with patients.13
A prospective multicenter study to assess patients’ understanding of the severity of their diagnosis before and after discussion with their oncologists found that patients with advanced cancer often do not understand their diagnosis and prognosis and that targeted prognostic discussions are effective at improving this understanding.14
Such discussions help the patient and family to come to terms with the illness and empower them to make informed decisions.
In an article in Journal of Clinical Oncology
, Mack and Smith15
outlined and dissected the reasons why poor prognosis is not discussed with patients. They cite that clinicians incorrectly believe that patients will become depressed, lose hope, and die sooner after frank discussions about poor prognosis, but concluded that patients and families want information about prognosis, regardless of severity, because it supports their ability to make informed decisions.
Conversely, a later study found that when communicating prognosis to patients, accurate prognostic understanding is associated with lower quality of life and worsened anxiety.16
Interventions to improve prognostic understanding must be balanced with adequate psychosocial support.
Another study published in Journal of Clinical Oncology
found that patients with metastatic cancer want detailed prognostic information, but they have varying preferences about the extent, format, and timing of information from their oncologist.17
The clinician must first assess the readiness of the patient and family to hear an estimated prognosis by asking whether they want to know before disclosing the information. If they do not wish to hear the prognosis, a GOC discussion may still take place, and hypothetical scenarios may help the clinician to explain what an aggressive or a comfort-based approach to EOL treatment might entail.
Together, this evidence suggests that the majority of patients want to know their prognosis and want to be kept informed of changes during the course of their illness. Clinicians must take into account patient readiness and psychosocial factors before delivering an estimated prognosis. They must also be prepared to put supportive measures in place to strengthen the contemporaneous roles of oncology and palliative care in cancer care.
Initial discussions on advanced directives and GOC can and likely should be initiated by the primary oncologist and primary care clinician and then woven into the usual process of care.18
These conversations can be done nonchalantly and in a nonthreatening manner with skill, ease, and grace. The subjects of palliative care, health care proxies, advanced directives, and communication of prognosis can be found in curriculums designed specifically for the practice of oncology.19
Advanced care planning does not mean having to obtain a DNR/DNI order or to discuss EOL issues. It is a process that opens an opportunity for patients to make their wishes known at each stage of the illness to both their clinicians and their families and caregivers. Moreover, advanced care planning addresses other topics such as health care proxy, artificial nutrition and hydration, legacy, and treatment limitations.18
Advanced directives also can be changed and adjusted throughout the trajectory of the illness and can help to avoid future confusion and conflict.18
In conclusion, both the primary oncologist and the palliative care specialist can play important, symbiotic roles in caring for a patient with advanced illness. Early referral to palliative care ensures that the patient establishes a trusting relationship with the team, has adequately controlled and managed physical and psychosocial symptoms, and is more accepting and less anxious about EOL care discussions should the time arise. The primary oncologist should also introduce the concept of advanced care planning and assess their patient’s readiness to hear the prognosis at the outset of their diagnosis. This process may be incorporated in a stepwise fashion during routine encounters to build trust and a sense of teamwork and to relieve fears and anxieties.18
As outlined in the American Medical Association’s Journal of Ethics Virtual Mentor Series
, the oncologist (who serves as the primary provider) and palliative care clinician’s participation in the EOL discussion adds value.20
The palliative care clinician likely has more daily exposure to patients with critical acute illness and thus more experience with initiating EOL discussions in the acute setting. The primary oncologist’s presence, however, is useful and supportive for introducing the patient’s values and belief systems to the PCCT so these are honored throughout the discussion. Often, the coordination of an inpatient meeting with caregivers who practice in different settings and have different schedules can be difficult but worth the extra effort for the patient.
Beneficence should be the goal of the oncologist and PCCT to provide an honest, compassionate, and complementary patient-centered discussion and treatment options whether illness is curable, chronic, or terminal. Both specialties have a duty to collaborate, educate, and support patients, their families, and each other on all the options for care across each stage of disease.