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

Strategies to Improve Patient-Oncologist Communication and Decision Making in Advanced Cancer

Several strategies can potentially improve the quality of oncologist-patient communication and decision making and facilitate the transition to end-of-life (EOL) care for patients who have advanced cancer. (Refer to the Training in Communication Skills section in the PDQ summary on Communication in Cancer Care for more information about workshops designed to improve the communication skills of oncology clinicians.)

This section summarizes information relevant to the following strategies:

  1. Improving prognostication or prognostic communication.
  2. Promoting advance care planning.
  3. Providing patients with materials to prepare for consulting with the oncologist.
  4. Utilizing decision aids.
  5. Integrating specialized palliative care services into conventional cancer care.

Improving Prognostication

A comprehensive review of various strategies to improve prognostication is beyond the scope of this summary. One study has recently published a concise overview.[1] There are several sources of prognostic information:

  • Clinical predictions of survival.
  • Patient performance status.
  • Patient-reported health-related quality of life (QOL), which is a prognostic factor in patients with advanced cancer. In one study of patients with locally advanced non-small cell lung cancer (NSCLC), scores on the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire C30 (EORTC QLQ-C30) replaced the classic prognostic factors, including Karnofsky Performance Status (KPS), on multivariate analysis.[2] Patients with EORTC QLQ-C30 scores of 66.7 or higher had a median overall survival (OS) of 27.1 months, compared with 15.4 months for patients with lower scores. However, a single measure of QOL may be sufficient.

    Other investigators reported on the prognostic impact of a single self-reported QOL item in a cohort of almost 2,500 patients with newly diagnosed lung cancer.[3] Patients with a clinically significant QOL deficit had a median survival of 1.6 years, compared with 5.6 years without a deficit. Older age, worse performance status, and advanced stage of disease were also significant predictors; the QOL measure maintained independent influence on multivariable analysis.

  • Formal prognostic systems using multiple variables.

Novel Strategies to Improve Communication of Prognosis

An Australian study demonstrated that most patients with metastatic cancer wanted information about life expectancy or prognosis; some patients thought that receiving estimates of worst-, typical-, and best-case outcomes would be acceptable.[4] Other investigators proposed that percentiles derived from multiple published OS curves for metastatic cancer would serve as the basis for estimating best- and worst-case scenarios.[5] Their subsequent work has established the following:

  • The method is reliable and accurate. For front-line chemotherapy in metastatic breast cancer or NSCLC, researchers could accurately estimate outcomes by using simple multiples of the median derived from an OS curve.[6] For example, for patients with metastatic breast cancer, the worst-case scenario for predicted survival was 6.3 months, and the best-case scenario was 55.8 months. Accuracy was less for worst-case scenarios. Similar results have been demonstrated for advanced-stage lung cancer.[7]
  • Oncologists' survival estimates may serve as a reasonable means to estimate best-case, worst-case, and typical outcomes. Researchers used the responses from oncologists who were asked to estimate expected survival time for each patient with advanced cancer enrolled in a randomized, double-blind, placebo-controlled trial of sertraline.[8] The oncologists were asked to record their estimates as a median time for a group of identical patients. The accuracy of the oncologist’s’ estimates was defined by the proportion of patients with an observed survival time bounded by prespecified multiples of their estimated survival times. The median OS of the cohort of 114 patients was 11 months. Sixty-three percent of the patients had an observed survival ranging from half to double the oncologists' estimates. Although the authors concluded that the oncologists’ estimates may serve as the basis for predicting survival, other factors such as the KPS were more predictive of outcome on multivariate analysis.
  • The approach is a reasonable way to communicate life expectancy, as judged by people who have cancer. Cancer patients completed a survey after reviewing two formats for explaining life expectancy to a hypothetical patient: either three scenarios (typical, best-case, or worst-case outcomes) or median survival. More respondents agreed that having the three scenarios explained would make sense, be helpful, convey hope, and reassure.[9] For information about their own life expectancies, 88% of respondents preferred being presented with all three scenarios.

Advance Care Planning (ACP)

The 1990 Patient Self-Determination Act guarantees patients the right to accept or refuse treatment and to complete advance medical directives to document their EOL preferences or to appoint someone to make decisions on their behalf in the event that their ability to make decisions is compromised. Studies indicate, however, that many patients have not participated in effective ACP. Several reasons might explain the underuse of ACP:[10-12]

  1. Initial studies of ACP did not demonstrate the anticipated improvement in outcomes.
  2. Physicians and patients are ambivalent about ACP.
  3. Patients’ preferences may vary over time.
  4. There was a failure to transfer information about preferences between inpatient and outpatient or different venues of care.

This section provides a glossary of ACP and highlights the ambivalence that surrounds ACP. It includes a review of subsequent evidence that demonstrates the benefit of ACP, concluding with the suggestion that a more nuanced approach to ACP will improve care near the EOL for patients who have advanced cancer.

The language of ACP

A brief glossary of the language of ACP may minimize confusion.

  • Advance directive: A formal legal document that goes into effect when a patient is incapacitated and unable to speak for him- or herself. This document is authorized by state laws and allows patients to retain their personal autonomy by providing instructions for care if they become incapacitated and cannot make decisions. The two main elements in an advance directive are a living will and a durable power of attorney for health care.
  • Living will: A written document that informs the oncologist how the patient wants to be treated if the patient is dying or permanently unconscious and unable to make decisions about treatment. In a living will, patients can specify the life-sustaining procedures they would want, the procedures they would not want, and the conditions under which each choice would apply. Patients may also wish to prepare separate documents to express their specific wishes about other medical treatments such as blood transfusion, organ and tissue donation, and kidney dialysis.
  • Durable power of attorney for health care: Also known as a health care proxy. A legal document authorizing another person (a health care proxy, surrogate, or health care agent) to make medical decisions when the patient is unable to do so. It is important for the proxy to be familiar with the patient’s values and wishes, so that he or she can speak competently on behalf of the patient and make appropriate decisions. Ideally, the patient and proxy will discuss these issues during the course of the illness, rather than during a medical crisis.

    A proxy can be chosen in addition to, or instead of, a living will. A durable power of attorney for health care allows the patient to be more specific about medical treatment than does a living will.

Documenting ACP decisions

Additional documents to communicate the patient’s preferences include the following:

  • Do-not-resuscitate (DNR) order: Tells medical staff in a hospital or nursing facility not to administer cardiopulmonary resuscitation (CPR) if the patient’s heart stops beating.
  • Out-of-hospital DNR order: Alerts emergency medical personnel to the nonhospitalized patient’s wishes regarding CPR and other resuscitation measures. The legal requirements for an out-of-hospital DNR order may differ from state to state but typically involve a document signed by the patient, a witness, and the physician. Patients and informal caregivers are advised to have multiple copies so that the document is immediately available to emergency medical personnel.
  • Do-not-intubate (DNI) order: Tells medical staff in the hospital or nursing facility that the patient does not wish to be put on a breathing machine.
  • Physician Orders for Life-Sustaining Treatment (POLST): Allows patients to specify the kind of medical treatment they want near the EOL. Printed and signed by both doctor and patient, the POLST document helps give seriously ill patients more control over their EOL care.
  • Medical Orders for Life-Sustaining Treatment (MOLST): An initiative that is intended to ensure that patients will receive EOL care according to their wishes and best interests. The MOLST document allows patients to indicate the type of care they would like to receive in situations when they cannot communicate, such as during resuscitation, intubation, and other life-sustaining treatments. Under current law, the information in a MOLST document must be adhered to, in both the home and the hospital, by all medical practitioners, including emergency medical service personnel.

Patient and physician ambivalence about ACP

One of the major impediments to effective ACP is patient and physician ambivalence. Patients with advanced cancer may be ambivalent about engaging in ACP with their oncologists because they perceive that oncologists are reluctant to engage in this discussion.[11,13] For example, one group of researchers reported that 87% of women with metastatic breast cancer had discussed EOL decisions with family or friends; 75% had gathered information about advance directives; and 66% had a written advance directive.[14] However, only 19% of those women had discussed EOL decisions with providers; only 24% had shared the written advance directives with the providers; and only 14 % of providers were aware of the advance directives. A study of hospitalized elderly patients similarly found that many had thought about EOL preferences (76.3%) or had an advance care plan (47.9%), but relatively few (30.3%) had discussed them with their physicians.[15]

These results suggest that patients engage in ACP but are reluctant to share their thoughts with their oncologists. Nevertheless, the oncologist is in the best position to know when to bring up the subject of EOL care, so he or she can initiate and thoughtfully guide the ACP discussion.[16]

ACP Reconsidered

Equivocal evidence is a source of physician ambivalence about ACP. Despite early concerns, however, there is growing evidence that ACP improves EOL care in patients with advanced cancer.

Early concerns about limits of ACP

Initial evidence about ACP was not favorable. For example, several studies found that:

  • Fewer than 50% of terminally ill patients had advance directives in their medical records.[17-19]
  • More than 65% of physicians were unaware that their patients had documented advance directives.[20]
  • Advance directives were not documented, were difficult to interpret, or were difficult for surrogates and physicians to follow.[17,21]

Potential benefits of ACP

Since the 1990s, randomized trials of ACP have demonstrated some benefit. For example, a randomized study compared usual care with a structured approach that included a motivational conversation with a social worker, and a booklet that described ACP and sought information about the patient’s desired health states and values.[22] The primary outcomes were comparisons of how closely providers and patients agreed about the following:

  • Patient preferences to forgo life-prolonging treatment in hypothetical health states.
  • Values.
  • Personal beliefs about hypothetical health states.

The intervention was associated with increased frequency of ACP discussions between physician and patient (64% vs. 38%; P < .001), and the intervention group had higher levels of agreement for all three outcomes.[22] The effect of ACP on health care outcomes was not studied.

A 2010 study monitored 309 patients older than 80 years and their caregivers for 6 months or until a patient died.[23] Researchers found that patients who engaged in ACP were more likely to have preferences that are known to others, and to receive care consistent with those preferences. In addition, compared with family members of patients in the control group, family members of patients in the intervention (with ACP) group who died had significantly less stress (intervention 5, control 15; P < .001), anxiety (intervention 0, control 3; P = .02), and depression (intervention 0, control 5; P = .002). Also, patient and family satisfaction were higher in the intervention group.[23]

Studies funded by the Agency for Healthcare Research and Quality show that satisfaction in patients aged 65 years and older increased when patients engaged in ACP with their doctors. Specifically, patients who discussed their preferences for EOL care experienced less anxiety and fear; felt more sense of control over their medical care; and believed that their physicians had a better understanding of their wishes. Surrogates had similar benefits.[24]

A 2011 report also suggests that ACP contributes significantly to higher-value EOL care. Researchers demonstrated that the association between evidence of ACP and reduced EOL Medicare expenditures varied according to the level of spending on aggressive treatments near the EOL.[25] Treatment-limiting advance directives were associated with lower levels of Medicare spending, lower likelihood of in-hospital death, and increased use of hospice in high-spending regions but not in low- or medium-spending regions. At a minimum, the study suggests that ACP may be one explanation for lower-cost regions.

A more nuanced approach to ACP

Advocates maintain that ACP has been too narrowly construed as completion of a document that expresses a patient’s EOL preferences or identifies a surrogate decision maker if a patient can no longer make decisions. Generally speaking, most patients from Western countries express greater needs for information related to their illnesses, treatment options, prognoses, future symptoms, likely trajectories of illness, and the dying process. Younger and more educated patients tend to seek more detailed information, while older patients and those from non-Western cultures tend to prefer nondisclosure. From that perspective, the limitations of ACP can be addressed by reconceptualizing ACP.

One proposal is to imagine ACP as an ongoing discussion designed to prepare patients and their families or friends to participate more meaningfully in future medical decisions, as required.[26] A focus group study of patients and surrogate decision makers identified four salient themes in discussing future health care decisions:[27]

  1. Identify values based on experiences and QOL.
  2. Choose surrogates wisely and verify that they understand their roles.
  3. Decide how much discretion to allow surrogate decision makers.
  4. Inform others to prevent conflict.

Before discussing ACP, it is essential that the oncologist determine the information needs of the patient so that communication and ACP can be tailored accordingly.[28]

Interventions to Support Patient-Oncologist Communication

Various interventions to support patient-oncologist communication have been studied. There are few comparative trials, and the outcomes of interest have varied, so it is not possible to evaluate the interventions. However, the variety of interventions will allow the interested oncology clinician to find one of interest.

Written information

Myriad informational booklets are available for patients to consult; prognostic information is discussed in some of these booklets. Researchers conducted a mixed-methods study of the views of cancer patients on written materials provided by their oncologists.[29] Patients expressed concerns that conflicting information could undermine their trust in their oncologists, and this concern influenced their willingness to consult written materials.

Another caution was raised by a randomized study that compared QOL and satisfaction between lung cancer patients scheduled for surgery who received verbal information only and those who received verbal and written information.[30] There were no differences in patient satisfaction with information; however, patients who received verbal and written information were less satisfied with the hospital stay. Thus, the presentation of written information may have unintended consequences, and oncologists may consider distributing only information that reflects their actual practices.

Audiotaped consultations

The impact of simply recording consultations on audiotape is significant, especially given the ease of doing so. In one randomized trial of initial consultations for all stages of cancer, 105 patients received audiotapes and 96 did not.[31] Patients who received the audiotapes were more satisfied and had better recall of information than did those who did not receive the tapes. In addition, younger patients were more satisfied, and older patients experienced enhanced recall. Another study reported similar results.[32]

Video-recorded information

The use of videos to facilitate discussions between providers, patients, and families and to assist with informed decision making has been demonstrated to be effective in at least two randomized controlled trials.[33,34] In both studies, patients and family members (where appropriate) found the videos acceptable and were comfortable with their content. In the first study, 50 patients with malignant glioma were randomly assigned to hear a verbal narrative or to hear the same verbal narrative and be shown a video that described three types of care:[33]

  • Life-prolonging care (extending life at any cost).
  • Basic medical care (including most care, but excluding CPR, intubation, mechanical ventilation, and admission to an intensive care unit).
  • Comfort care (relieving symptoms, maximizing comfort, and generally avoiding hospitalization).

Participants in the sample had a mean age of 54 years; 44% were female, 50% did not want CPR at baseline, and 76% had advance directives. When asked postintervention about their preferences for type of care, 26% of participants in the verbal control group preferred life-prolonging care, compared with none in the video intervention group. More patients in the video intervention group preferred comfort care than did patients in the verbal control group (91% vs. 22%, respectively).[33]

In the second study, 150 patients with advanced cancer from four cancer centers were randomly assigned to listen to a verbal description of CPR or to listen to the same verbal description and then be shown a 3-minute video of simulated CPR being done on a patient on a ventilator.[34] The primary outcome was participants’ preference for or against CPR measured immediately after exposure to either modality. As in the first study, more patients receiving the video intervention with the narrative decided against CPR than did those receiving only the narrative (79% vs. 51%, respectively). Knowledge scores were also significantly higher in the video arm (P < .001). Results at the 6- to 8-week follow-up demonstrated fairly stable decision results. These studies suggest that videos can be used as an adjunct to oncologist-patient communication and education.

Question prompt lists

Patients may have difficulty posing questions about sensitive and difficult issues such as prognosis or EOL care. Question prompt lists can be prepared to help guide patients through such questions. One group of researchers developed and tested a question prompt list for advanced cancer patients to use during consultation with a palliative care physician.[35] Patients randomly assigned to the intervention arm more frequently asked more questions related to prognosis and EOL issues than did patients in the control group (30% vs. 10%; P = .001). There were no negative effects on patient satisfaction or anxiety. A slightly different strategy—addressing the prompt list to informal caregivers of patients with advanced cancer—was evaluated in another study and appeared promising.[36]

Cancer consultation preparation package (CCPP)

A CCPP developed by one group of researchers consists of four components:[37]

  1. A booklet that describes the cancer center’s procedures and layout.
  2. A booklet that introduces the concept of evidence-based decision making and factors other than evidence that influence decisions.
  3. A booklet that describes the patient’s rights and responsibilities.
  4. A question prompt list.

A randomized trial of the CCPP versus a control booklet in 164 initial consultations for patients with a variety of cancers at different stages demonstrated that patients receiving the CCPP asked significantly more questions (11 questions vs. 7 questions; P = .005) without increasing their anxiety. However, patients assigned to the CCPP did not participate in decision making more often or more actively than did patients in the control group.[37]

Pamphlet and psychologist-facilitated discussion

In a randomized trial, an ACP pamphlet supplemented by a discussion with a psychologist was compared with usual care.[38] Patients in both cohorts had equivalent rates of DNR orders (68% vs. 76%), but DNR orders for the intervention group were placed at a median of 27 days, compared with 12.5 days for the control group (P = .03). Intervention patients were less likely to die in the hospital (19% vs. 50%), and there was no increased sense of anxiety. Interpretation of the study results is hampered by a high rate of loss to follow-up, and the intention-to-treat analysis was not significant.

Decision Aids

Decision aids are more complicated interventions designed to provide patients with a balanced summary of information about potential treatment options and possible outcomes, to allow patients to make informed decisions consistent with their preferences. Decision aids complement the patient-oncologist relationship and have been studied in two situations relevant to the care of patients with advanced cancer: the decision to undergo chemotherapy in advanced cancer and the decision to prepare for the EOL.

The decision to undergo chemotherapy

In a 2011 study of patients with metastatic colorectal cancer who were deciding whether to initiate first-line systemic chemotherapy, 207 patients were randomly assigned to receive either a standard oncology consultation or a standard consultation supplemented by a take-home booklet and audio recording of the consultation.[39] Patients assigned to the decision aid demonstrated increased understanding of the prognosis, treatment options, and goals of treatment. There were no differences in decisional conflict, levels of anxiety, patient achievement of preferred level of involvement in decision making, or treatment selected.

The decision to engage in ACP

In a pilot semirandomized trial, patients with advanced cancer who met with a trained care planning mediator were more likely to discuss future preferences with families and friends (but not with their oncologists).[40] Slightly more than half of patients with advanced cancer were willing to meet with an independent trained counselor about ACP. Patients assigned to meet with the mediator tended to be less satisfied with communication with health care professionals and less satisfied with future care. Thus, while ACP with a trained mediator is feasible, the costs of additional personnel may be prohibitive and create unmet expectations in patients.

Decisions related to resuscitation status

Several approaches to facilitate discussion about a patient’s resuscitation preferences and status have been studied. The approaches include the following:

  • The use of computer-based prompts to advise the clinician to initiate the discussion.[41]
  • An informational DVD and booklet for family caregivers to better understand the resuscitation option.[34]
  • Audiovisual vignettes to illustrate the process and outcomes of resuscitation.[42]
  • A structured discussion with a clinical psychologist.[38]

In several studies, DNR orders were more common in the intervention group or occurred earlier. The secondary outcomes included earlier and higher rates of discussions with patients and family members regarding resuscitation, lower decisional conflict and uncertainty, and more value clarification. In at least two studies, there was no increase in anxiety and/or depressive symptoms. These decision aids are limited to use among adult patients.

Physician attitudes toward decision aids

Researchers conducted a cross-sectional survey of Canadian medical, radiation, and surgical oncologists to determine their levels of awareness and utilization of patient decision aids.[43] Slightly fewer than half (46%) were aware of decision aids relevant to their practices, and only 24% utilized aids in their practices. Most respondents recognized the important clinical outcomes associated with decision aids, i.e., increased knowledge, reduced anxiety, and increased patient satisfaction. Lack of awareness was the most frequently cited barrier to use (69%), followed by lack of resources (24%) and lack of time to learn about decision aids (24%). Only 3% of respondents cited lack of time as a barrier to the use of decision aids. Strategies to introduce decision aids into clinical practice are clearly needed and could start with educating oncologists about available decision aids.

Integrating Palliative Care and Conventional Cancer Care

In 2012, the American Society of Clinical Oncology (ASCO) published a provisional clinical opinion (PCO) advising its membership that “… combined standard oncology care and palliative care should be considered early in the course of illness for any patient with metastatic cancer and/or high symptom burden.”[44] The authors primarily based their recommendation on two randomized clinical trials of palliative care interventions during conventional cancer care for people with metastatic cancer that supported results of several older and inconclusive randomized clinical trials.[45]

Randomized trial of an advance practice nurse–led psychoeducational intervention

One group of investigators reported the results of Project ENABLE (Educate, Nurture, Advise, Before Life Ends).[46] Three hundred twenty-two patients with advanced cancer were randomly assigned to receive either usual care or a multicomponent psychoeducational intervention conducted by advance practice nurses concurrent with usual care. The primary outcomes were QOL, as measured by the Functional Assessment of Chronic Illness Therapy for Palliative Care; symptom intensity, as measured by the Edmonton Symptom Assessment Scale; and mood, as measured by the Center for Epidemiological Studies Depression Scale.

The intervention was based on the chronic care model; the goal was to encourage patient involvement in care planning, self-management, and empowerment. The intervention consisted of four weekly educational sessions and a monthly follow-up. The four modules consisted of the following:

  1. Problem solving.
  2. Communication and social support.
  3. Symptom management.
  4. ACP and unfinished business.

The estimated treatment effects (intervention minus usual care) for all participants were a mean of 4.6 for QOL (P = .02); −27.8 for symptom intensity (P = .06); and −1.8 for depressed mood (P = .02). Patients who died during the study had less-marked treatment effects. There was no difference in OS or use of chemotherapy or aggressive medical care near the EOL. Furthermore, there were no differences between groups in rates of referral to palliative care or hospice.[46]

Randomized trial of concurrent palliative care and standard oncology care for patients with metastatic lung cancer

The second study randomly assigned 151 patients with newly diagnosed metastatic NSCLC to receive either standard oncology care or standard oncology care with the early integration of palliative care. Patients assigned to palliative care met with a member of the palliative care team within 3 weeks of diagnosis. General guidelines called for palliative care clinicians to pay specific attention to the following:

  • Assessment of physical and psychological symptoms.
  • Establishment of goals of care.
  • Assistance with decision making about treatment.
  • Coordination of care on the basis of the patient’s individual needs.

The primary and secondary analyses of the study have been reported in an original publication and then in several secondary publications,[47-49] summarized below.

  • The primary outcomes of the trial were QOL (as measured by the Functional Assessment of Cancer Therapy—Lung) and mood (as measured by the Hospital Anxiety and Depression Scale). The outcomes were assessed at baseline and again at 12 weeks. The secondary outcomes were survival and measures of EOL care abstracted from medical records. Patients assigned to receive concurrent palliative care reported higher QOL (98.0 vs. 91.5; P = .01). Fewer patients in the palliative care arm had depressive symptoms (16% vs. 38%; P = .05). Furthermore, the median OS of patients in the palliative care cohort was longer (11.6 months vs. 8.9 months; P = .02). Finally, fewer patients in the palliative care cohort received aggressive treatment—chemotherapy within 14 days of death, no hospice care, or hospital admission within 3 days of death—than did those in the usual care group (33% vs. 54%; P = .05).[47]
  • Given how important patient understanding of prognosis is to treatment preferences and decision making, a secondary analysis was conducted to assess the effect of palliative care on the accuracy of patient perception of prognosis and goals of anticancer therapy.[48] At baseline, 31.7% of patients with metastatic NSCLC reported that their cancer was curable. Patients who received early palliative care were more likely to report knowing the goal of treatment at 12 and 18 weeks than were patients in the standard care cohort (e.g., at 12 weeks, 39.5% of patients in the standard care cohort reported that their cancer was curable, compared with 22.2% in the palliative care cohort; P = .08). Most patients in both arms maintained a belief that the goal of therapy was to “get rid of all my cancer.” Nonetheless, 82.5% of patients in the palliative care arm maintained or developed an accurate perception of prognosis, compared with 59.6% in the standard care arm.

    Patients in the palliative care cohort who had an accurate understanding of prognosis were less likely to receive chemotherapy than were patients who had an inaccurate understanding of prognosis (9.4% vs. 50%; P = .02). A similar effect was not seen in patients in the standard care arm; the percentage of patients in the standard care arm receiving chemotherapy did not differ on the basis of perception of prognosis.

  • An additional secondary analysis sought to determine whether early palliative care affected chemotherapy use or hospice enrollment.[49] Investigators reported that the overall number of regimens did not change on the basis of assignment to the standard care or palliative care cohort. However, patients assigned to palliative care were less likely to receive chemotherapy within 60 days of death (52.5% vs. 70.1%; P = .05). With respect to hospice enrollment, although there was no significant difference in the rates of referral, about twice as many participants receiving early palliative care compared with usual care received hospice care for longer than 1 week (60% vs. 33.3%; P = .004).
  • The investigators also tested the hypothesis that the observed improvement in survival was attributable to improvement in depression.[50] Depression predicted worse survival, and patients assigned to the palliative care cohort experienced higher rates of improvement. However, there was no significant correlation with improvement in survival.
  • One group of investigators reported a study of the initial consultation summary from the electronic medical record to determine the frequency of management of symptoms, illness understanding, treatment decision making, patient and family caregiver coping, and care planning.[51] The median time of the initial consultation was 55 minutes (range, 20–120 minutes), and most of the time was spent addressing symptoms, coping, and understanding of illness. Patients with lower QOL were likely to require more time.
  • An additional qualitative analysis of clinical notes was performed to identify key elements of the palliative care consultations and their timing and compare the content of palliative care versus oncologic visits.[52] Palliative care consultations were more likely to focus on symptoms, psychosocial issues, and clarifying understanding of illness. Oncologists focused more on treatment of cancer and management of complications. The contribution of these differences to the observed outcomes is not known.

Challenges to the early integration of palliative care

Several of the more relevant challenges to the integration of palliative care into standard oncology care are listed below, followed by a summary of the available data.

  • Availability of specialty palliative care services: In a survey published in 2010, only 59% of National Cancer Institute (NCI) cancer centers and 33% of non-NCI cancer centers reported having palliative care programs with the level of resources for programs varying widely.[53] However, at least half of the executives surveyed indicated an interest in expanding services in the coming years, although there were differences based on the NCI designation. Of interest is that the identified impediments to developing services further were more related to poor reimbursement or limited institutional budget than to concerns about the evidence supporting the services.
  • Oncologists’ referral of patients to specialty palliative care services: A survey of Canadian cancer specialists demonstrated that 94% had access to at least one component of palliative care services, but only 36% of respondents had access to comprehensive palliative care services.[54] In addition, 80% of physicians indicated that they always or usually referred terminally ill patients, with the time of referral evenly split between at diagnosis, during palliative chemotherapy, or after chemotherapy or transfusions were stopped.
  • Oncologist attitudes toward palliative care.
  • Patient acceptance.
  • Perceived knowledge deficits: There is a lack of evidence about the critically important components of palliative care necessary for successful integration and positive outcomes.[46,55,56]
  • Funding: A survey of 20 outpatient palliative care clinics indicated that billing for services and institutional support were the primary sources of funding, but most identified funding for staff as a major challenge.[57]

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  • Updated: September 5, 2014