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Planning the Transition to End-of-Life Care in Advanced Cancer (PDQ®)

The Oncology Clinician’s Role in Planning the Transition to End-of-Life Care

Perspective

In 1961, a survey of 219 physicians was published, with 88% of respondents indicating that their “usual policy about telling patients” they have cancer was “don’t tell”; however, 34% of the group indicated that they occasionally made exceptions and disclosed the diagnosis, most often to family members.[1] The identical survey was repeated in 1977, with a different group of 264 physicians; at that time, 98% of respondents indicated that telling a patient about the diagnosis of cancer was their usual policy, although 28% reported occasionally making an exception.[2]

The effective communication of prognosis remains a challenge, however, as measured by patient-reported estimates of life expectancy or goals of treatment. For example, in 1984, one study reported that 37% of patients with metastatic, incurable cancer felt that treatment would cure their disease.[3] Similarly, another study reported in 2012 that 69% of patients with advanced lung cancer and 81% of patients with advanced colorectal cancer enrolled in the Cancer Care Outcomes Research and Surveillance (CanCORS) study were unaware that chemotherapy was not likely to cure their disease.[4] In fact, almost 40% of patients with colorectal cancer responded that chemotherapy was very likely to cure the disease. A related analysis of the CanCORS data set revealed that only 16.5% of patients reported an accurate awareness of their prognosis.[5] Similar results have been reported from a study of patients with advanced cancer that assessed their understanding of their prognosis at enrollment and 12 weeks later.[6]

Potential explanations for the communication deficits regarding prognosis are summarized in the Potential Barriers to Planning the Transition to End-of-Life Care section of this summary. Regardless of the explanation, however, misunderstandings about prognosis compromise a patient’s ability to make informed health care decisions consistent with his or her values, goals, and preferences. Ultimately, each oncology clinician chooses, on some level, when and how to explain to a patient with advanced cancer that disease-directed treatments are very unlikely to prove effective and a continued focus on treatment risks harming the patient.

The goal of this summary section is to provide clinicians with frameworks for considering their role in planning the transition to end-of-life (EOL) care and discussing the concept of transition with patients and their loved ones.

The Patient-Clinician Relationship and Planning the Transition to EOL Care

It is important for oncology clinicians to consider how their relationship with patients will help patients express preferences that are consistent with their values and goals for receiving high-quality EOL care. One study proposed the following four models of the physician-patient relationship, based on the goals of the interaction, the physician’s obligations, the role of patient values, and how patient autonomy influences the relationship:[7]

  • Paternalistic: The focus is on the physician’s assessment and judgment of best treatment, with limited or no patient participation, other than providing consent.
  • Informative: The focus is on the physician providing the patient with disease and treatment information that is as complete as possible, with decision making left to the patient.
  • Interpretive: The physician acts as a counselor to help the patient discern his or her values and preferences, provides medical information, and then advises the patient about which appropriate tests and treatments best reflect the patient’s values.
  • Deliberative: The physician’s role is to assist the patient in both determining and then choosing the best health-related goals and options, with the attitude of a friend or teacher. The physician plays an active part in suggesting which values and options are the most worthy.

In a carefully reasoned argument, the authors concluded that the preferred choice is the deliberative model, which can be paraphrased as a belief that patients’ goals and preferences are open to development and evolution. The goal of this relationship is to help the patient choose the best health-related goals and options that can be achieved, given the clinical situation. The physician’s obligation is to articulate for the patient the most compelling goals and preferences and to inform the patient of other options. In that sense, the physician is a teacher.[7]

Qualitative studies of patients’ perception of decision making suggest that the deliberative clinician-patient relationship is especially critical in advanced-stage cancer. For example, one group of investigators interviewed 36 patients with potentially curable esophageal cancer about their decision to undergo esophagectomy. The investigators anticipated that themes related to autonomy, shared decision making, and information disclosure would become apparent; however, the following themes emerged:[8]

  1. Cultural belief in surgical cure.
  2. Enhancement of trust through the referral process.
  3. Idealization of the specialist surgeon.
  4. Belief in expertise rather than medical information.
  5. Resignation to the risks of treatment.
  6. Acceptance of an expert recommendation as consent to treatment.

Another group of investigators interviewed patients with pancreatic carcinoma and identified a change in attitudes toward treatment decision making over time.[9] Initially, patients described little interest in details about medical or surgical treatments and emphasized their trust in the physician. Later, as patients had more experience with disease progression and treatment, they described seeking a more proactive role in treatment decisions. All patients reported discussions about their poor prognosis, but a common theme was the difficulty in recognizing when it was time to stop treatment and transition to EOL care.

Planning the Transition from Diagnosis to EOL Care

The word transition implies a passage from one place to another. Planning the transition to EOL care, therefore, requires a shared understanding of where the patient is in the advanced-cancer disease trajectory and why a transition is necessary or advisable.

The appropriate time to transition to EOL care is when the change is most consistent with the patient’s goals of care. In answering the question of when to transition to EOL care, the oncology clinician strives to be a teacher and trusted friend. The clinician must present his or her opinion of the effectiveness of continued cancer-directed treatments and help the patient understand the patient’s own values, perspectives, goals of care, and preferences. In this way, the clinician aids the patient in constructing treatment and care preferences toward the EOL.[10]

The concept of transition is often invoked from the health care provider’s perspective.[11,12] For example, patients who received adjuvant chemotherapy with curative intent are often spoken of as making a transition from the curative to the palliative phase of treatment.

The figure below depicts a phase model of planning the transition to EOL care for patients with advanced cancer.

Diagram showing a phase model of planning the transition to end-of-life (EOL)  care  in advanced cancer.
A phase model of planning the transition to end-of-life (EOL) care in advanced cancer. The trajectory of advanced cancer begins with the realization that disease-directed treatments are no longer curative. Over time, the patient, family, and oncology clinician should strive to develop a shared understanding of available treatments and recognize when the likelihood of benefit decreases in relation to the potential harm of treatment. LST = life-sustaining treatment; EOL = end-of-life

Panel A of the figure demonstrates the increasingly unfavorable risk-benefit ratio of disease-directed treatments over time. This conceptualization is also from the oncology clinician’s perspective. The oncology clinician could choose two tactics to develop a shared understanding of the decline in the risk-to-benefit ratio:

  • Distinguish between effectiveness and benefit: The health care decisions of patients with advanced cancer toward the EOL may, at times, seem contrary to their best interests from the clinician’s perspective.[13] A relevant explanation for the difference may be that patients think in terms of benefit, which includes both the chance of an outcome and its desirability; while clinicians think in terms of the evidence of effectiveness, which is assessed with probabilities.[14]
  • Explore patient’s understanding of their prognosis and their goals at sentinel events: There are relatively discrete points in the disease trajectory, called sentinel events, when the oncologist has an opportunity to clarify prognosis and discern patient goals and preferences.[15] Sentinel events include scheduled assessments of the disease status (e.g., repeat tumor measurements after a prespecified number of cycles of chemotherapy), effects of chemotherapy on overall health-related quality of life, and the side effects of or complications from disease progression or therapy (e.g., decline in performance status).

Panel B of the figure represents the concept of transitions. The disease trajectory is divided into five relatively discrete phases, from the diagnosis of advanced cancer to death. The first two phases are dominated by disease-directed strategies, including a phase in which the intent of disease-directed treatment is cure; and a second phase in which the intent of treatment is symptom relief, disease control and, perhaps, improved life expectancy. The EOL phase is subdivided into a time in which the patient is not receiving therapy but may still anticipate treatment in the future, and a phase in which the goal of care is to ensure that the EOL is free from undue burden or distress. Similar figures are often modified to include a diagonal line depicting a gradual increase in the focus on palliative care as the cancer progresses and life is more likely to end.

The figure represents the advanced-cancer trajectory to help oncologists formulate and articulate the potentially salient differences between the phases from the oncologist’s perspective in terms of the following:

  • Treatment options, intent, range of possible outcomes, and likelihood of potential outcomes.
  • The likely experience, including potential risks and the burden of each option in terms of side effects and practical requirements of treatment.
  • Key activities (e.g., chemotherapy), scheduled assessments of disease status, and the treatment experience associated with each option or phase.

The oncology clinician should then endeavor to communicate the information in a compassionate manner that is comprehensible to the patient and family. (Refer to the Strategies to Improve Patient-Oncologist Communication and Decision Making in Advanced Cancer section of this summary for more information.)

Clearly describing each phase, however, does not necessarily inform patients of when it is time to transition. A focus group study of health care providers, patients with advanced cancer and other terminal illnesses, and family members prioritized three discrete communication skills as valuable to the dying person: giving bad news sensitively, talking about dying, and knowing when the patient was ready to talk about dying.[16]

In conclusion, the right time to transition away from disease-directed treatments toward EOL care depends, in large part, on the patient’s goals and preferences. The evidence indicates that conversations about EOL care are difficult but of great benefit to the patient. Oncologists who delay initiating these important conversations or who communicate in ambiguous or difficult-to-understand language fail to meet “the physician’s central task in caring for a gravely ill person near death[, which] is to accompany and guide the patient, who as a rule does not want to be dead, through the critical transition.”[17]

References

  1. OKEN D: What to tell cancer patients. A study of medical attitudes. JAMA 175: 1120-8, 1961. [PUBMED Abstract]
  2. Novack DH, Plumer R, Smith RL, et al.: Changes in physicians' attitudes toward telling the cancer patient. JAMA 241 (9): 897-900, 1979. [PUBMED Abstract]
  3. Eidinger RN, Schapira DV: Cancer patients' insight into their treatment, prognosis, and unconventional therapies. Cancer 53 (12): 2736-40, 1984. [PUBMED Abstract]
  4. Weeks JC, Catalano PJ, Cronin A, et al.: Patients' expectations about effects of chemotherapy for advanced cancer. N Engl J Med 367 (17): 1616-25, 2012. [PUBMED Abstract]
  5. Liu PH, Landrum MB, Weeks JC, et al.: Physicians' propensity to discuss prognosis is associated with patients' awareness of prognosis for metastatic cancers. J Palliat Med 17 (6): 673-82, 2014. [PUBMED Abstract]
  6. Craft PS, Burns CM, Smith WT, et al.: Knowledge of treatment intent among patients with advanced cancer: a longitudinal study. Eur J Cancer Care (Engl) 14 (5): 417-25, 2005. [PUBMED Abstract]
  7. Emanuel EJ, Emanuel LL: Four models of the physician-patient relationship. JAMA 267 (16): 2221-6, 1992 Apr 22-29. [PUBMED Abstract]
  8. McKneally MF, Martin DK: An entrustment model of consent for surgical treatment of life-threatening illness: perspective of patients requiring esophagectomy. J Thorac Cardiovasc Surg 120 (2): 264-9, 2000. [PUBMED Abstract]
  9. Schildmann J, Ritter P, Salloch S, et al.: 'One also needs a bit of trust in the doctor ... ': a qualitative interview study with pancreatic cancer patients about their perceptions and views on information and treatment decision-making. Ann Oncol 24 (9): 2444-9, 2013. [PUBMED Abstract]
  10. Epstein RM, Peters E: Beyond information: exploring patients' preferences. JAMA 302 (2): 195-7, 2009. [PUBMED Abstract]
  11. Agren Bolmsjö I, Nilstun T, Löfmark R: From cure to palliation: agreement, timing, and decision making within the staff. Am J Hosp Palliat Care 24 (5): 366-70, 2007 Oct-Nov. [PUBMED Abstract]
  12. Gramling R, Norton SA, Ladwig S, et al.: Direct observation of prognosis communication in palliative care: a descriptive study. J Pain Symptom Manage 45 (2): 202-12, 2013. [PUBMED Abstract]
  13. Matsuyama R, Reddy S, Smith TJ: Why do patients choose chemotherapy near the end of life? A review of the perspective of those facing death from cancer. J Clin Oncol 24 (21): 3490-6, 2006. [PUBMED Abstract]
  14. Pellegrino ED: Decisions to withdraw life-sustaining treatment: a moral algorithm. JAMA 283 (8): 1065-7, 2000. [PUBMED Abstract]
  15. Walling A, Lorenz KA, Dy SM, et al.: Evidence-based recommendations for information and care planning in cancer care. J Clin Oncol 26 (23): 3896-902, 2008. [PUBMED Abstract]
  16. Wenrich MD, Curtis JR, Shannon SE, et al.: Communicating with dying patients within the spectrum of medical care from terminal diagnosis to death. Arch Intern Med 161 (6): 868-74, 2001. [PUBMED Abstract]
  17. Finucane TE: How gravely ill becomes dying: a key to end-of-life care. JAMA 282 (17): 1670-2, 1999. [PUBMED Abstract]
  • Updated: March 13, 2015