But by this time her agitation had spiraled out of control, and it took one interminable hour before Fran showed any visible signs of relief. Fran died in the early hours of the morning with only the private duty aide by her side. In trying to make peace with these unsettling events, Andrea has struggled to figure out why things went so awry. Fran received hospice care only days before she died. Andrea now recognizes the importance of engaging families in conversations about palliative and hospice care early on, however difficult and painful they are.
Andrea considers that earlier palliative and hospice care would have facilitated stronger relationships with caregivers well in advance of her death — relationships that could have made a difference in the end. Andrea believes that numerous transitions between hospice providers are an important barrier to compassionate hospice care.
Over the course of four days, three different hospice nurses plus various staff manning the hour phone line treated Fran and the family. Frequent staff changes made it impossible for any one caregiver to know Fran, form an alliance with the family or take ownership of her treatment. Andrea observed that another impediment to a compassionate hospice experience is a reluctance to acknowledge accountability after a breakdown in care. Immediate and genuine apology can be a powerful antidote to anger and grief, and it can promote healing.
She believes that providers can learn, grow and change by acknowledging and reviewing lapses in compassionate care. Apologies can also provide important closure for families. She firmly believes that compassion is the cornerstone, and she struggles to understand how one can count on compassionate treatment at the very end of life when it is most desperately needed. A good place to start, she feels, is recognizing that caregivers, like their patients, are human too. Clinicians attend to the exquisite vulnerability of dying patients, but they may be unaware of their own.
Those on the front line must strike a delicate balance between protecting their emotional wellbeing while remaining empathic to patients. Andrea also believes that a culture of self-inquiry, along with a willingness to apologize and implement appropriate changes, gives hospice the greatest chance of delivering compassionate treatment. Patients who died during the study had less-marked treatment effects. Furthermore, there were no differences between groups in rates of referral to palliative care or hospice.
The second study randomly assigned 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:. The primary and secondary analyses of the study have been reported in an original publication and then in several secondary publications,[ 49 - 51 ] summarized below.
This single-blinded study reported the outcomes of patients who were assigned to receive palliative care and conventional cancer care or conventional cancer care alone. Secondary outcomes were the FACIT-Sp at 4 months and other validated measures of QOL, symptom burden, satisfaction with care, and quality of medical interactions at 3 and 4 months. There were no statistically significant differences in the change FACIT-Sp scores at 3 months, but differences did emerge at 4 months; in addition, there were significant differences in the secondary outcomes at 3 and 4 months.
These results confirm the benefit of concurrent palliative care and suggest that the benefits of palliative care will increase over time. This study compared the outcomes of patients randomly assigned to begin receiving palliative care interventions within 30 to 60 days of diagnosis versus 3 months from diagnosis of advanced cancer. The outcomes of interest were QOL, symptom impact, mood, resource use, and improved 1-year survival. There were, however, no statistically significant differences in patient-reported outcomes or resource use.
Furthermore, the OS log-rank test did not reveal a significant difference, suggesting the survival curves converge after the 1-year point. A few limitations of the study potentially complicate interpretation. First, the study did not meet its accrual goal of patients, in part because of high rates of ineligibility after screening and patient refusal. Third, the multiple outcomes may have limited the statistical power to detect meaningful differences, especially given the smaller-than-desired sample size.
Thus, a more-accurate interpretation of the results may be that the optimal time of palliative care interventions remains undetermined. For all caregivers, the early intervention was associated with lower depression scores at 3 months. Caregivers of decedents who received palliative care early had lower depression and burden in the terminal phase.
These results are notable in establishing a benefit to caregivers. 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. View in own window. The effective communication of prognosis remains a challenge, however, as measured by patient-reported estimates of life expectancy or goals of treatment.
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. 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.
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. 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. In that sense, the physician is a teacher.
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 ]. Another group of investigators interviewed patients with pancreatic carcinoma and identified a change in attitudes toward treatment decision making over time. 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. 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. In answering the question of when to transition to EOL care, the oncology clinician strives to be a teacher and trusted friend.
In this way, the clinician aids the patient in constructing treatment and care preferences toward the EOL. The figure below depicts a phase model of planning the transition to EOL care for patients with 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. Panel A of the figure demonstrates the increasingly unfavorable risk-benefit ratio of disease-directed treatments over time. The oncology clinician could choose two tactics to develop a shared understanding of the decline in the risk-to-benefit ratio:.
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 oncology clinician should then endeavor to communicate the information in a compassionate manner that is comprehensible to the patient and family. 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.
The evidence indicates that conversations about EOL care are difficult but of great benefit to the patient.
Our view on issues around assisted dying and end of life
The PDQ cancer information summaries are reviewed regularly and updated as new information becomes available. This section describes the latest changes made to this summary as of the date above. Added American Cancer Society as reference 1. Added American Cancer Society as reference 7. Board members review recently published articles each month to determine whether an article should:. Changes to the summaries are made through a consensus process in which Board members evaluate the strength of the evidence in the published articles and determine how the article should be included in the summary.
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Questions can also be submitted to Cancer. Turn recording back on. National Center for Biotechnology Information , U. Search term. Overview The American Cancer Society estimates that more than , Americans will die of cancer in However, the adverse consequences of failing to plan for the transition to EOL care include the following: Increased psychological distress. Atlanta, Ga: American Cancer Society, Available online.
Last accessed June 7, This section: Reviews the concept of quality EOL care. Quality of EOL Care Questions relevant to the goal of measuring the quality of EOL care in patients with advanced cancer include the following:[ 1 ] Which evidence-based guidelines inform assessments of quality? Are the quality indicators of interest accurate, readily available, and plausibly linked to desired outcomes? The patient perspective Surveys and interviews of patients with life-threatening illnesses, not restricted to cancer, can contribute to the understanding of what constitutes high-quality EOL care.
One group of researchers proposed that patients value five main domains of care near the EOL:[ 2 ] Receiving adequate pain and symptom management. Indicators of EOL care quality A variety of indicators have been proposed to measure the quality of EOL care in patients with advanced cancer. Several salient criticisms of the proposed indicators include the following: Indicators are typically measured in a period before death that is defined retrospectively from death. Clinicians cannot predict whether an intervention will be futile in preventing death; consequently, quality concerns may be exaggerated if the indicator is dependent on the time to death.
Renz, M ‘Dying: A Transition (End of Life Care: A Series)’ – Over the Threshold
Quality indicators may be insensitive to patient preferences. For example, a patient may prefer to receive chemotherapy close to death and forgo hospice enrollment. Conversely, the failure to deliver treatments consistent with guidelines may reflect patient refusals or medical contraindications to the recommended treatment. Administrative databases do not capture data for all patients. Many indicators were not deliberately developed as measures of quality and may be insensitive to important outcomes.
Trends over time in indicators of EOL care quality Multiple reports are relevant to understanding trends in EOL care quality indicators over time for a variety of cancers.
Death Doulas and End of Life Care
The following observations are supported by a analysis,[ 6 ] with additional supporting citations indicated when relevant: Increasing numbers of patients start a new chemotherapy regimen within 30 days of death or continue to receive chemotherapy within 14 days of death. Increasing numbers of patients are referred to hospice; however, the length of stay in hospice remains relatively brief, supporting the concern that referrals to hospice may occur too late. The rates of utilization of ICU stays have also increased. For example, one study [ 8 ] reported that for patients dying from pancreatic cancer, admissions to ICUs increased in two different time periods: from to , ICU admissions increased from This suggests that communication about resuscitation preferences is delayed.
This delay may negatively affect patient preparation for the EOL. Regional variations in indicators of EOL care quality Regional variations in rates of utilization of health care resources near the EOL are of interest because the differences are rarely associated with improved outcomes. Compared with men enrolled in a fee-for-service Medicare product, older men with advanced cancer who received treatment through the VHA were less likely to receive chemotherapy within 14 days of death 4.
In the opinion of the authors, the observed regional variations were too large to be accounted for by racial or ethnic preferences or illness levels. Factors associated with variations in EOL care Availability of medical specialists, numbers of hospital beds, physician, and health system characteristics are well-established factors associated with increased expenditures in the final 6 months of life. One study surveyed 2, Medicare beneficiaries about their general preferences for medical care in the event of a serious life-limiting illness with a life expectancy of less than 1 year.
There were no differences between preferences for palliation or life prolongation by region. Thus, it is unlikely that regional variations in preferences account for observed variation in EOL spending. Conversely, a secondary analysis of the potential influence of treatment site on the Coping with Cancer study outcomes demonstrated that the effect of treatment site partly resulted from differences in patient preferences. The Good Death The health care provider perspective The concept of a good death is a controversial but potentially useful construct for the oncology clinician to more clearly formulate the goals of timely, compassionate, and effective EOL care.
Health care provider beliefs and attitudes may diminish the chances for a good death if they interfere with adequate pain or symptom control. The patient perspective A landmark study of patients, families, and health care providers [ 17 ] surveyed seriously ill patients, bereaved caregivers, physicians, and other health care providers about what matters at the EOL. However, factors negatively correlated with QOL included the following: Intensive care in the last week. A meta-analysis of survival after in-hospital CPR found that survival to discharge was 6. Researchers have described the extremely poor outcomes of patients who were resuscitated in the medical ICU.
BMJ : , JAMA 2 : , Support Care Cancer 19 5 : , J Pain Symptom Manage 42 3 : , J Clin Oncol 31 21 : , J Clin Oncol 22 2 : , Arch Intern Med 3 : , Cancer 21 : , Palliat Support Care 6 4 : , JAMA 12 : , Cancer 15 : , Last accessed February 28, Ann Intern Med 4 : , Med Care 45 5 : , Cancer 19 : , Ellershaw J, Ward C: Care of the dying patient: the last hours or days of life.
JAMA 19 : , Palliat Med 20 7 : , Lancet : , Psychooncology 21 8 : , Arch Intern Med 15 : , Support Care Cancer 18 1 : , Resuscitation 71 2 : , Cancer 92 7 : , Support Care Cancer 10 5 : , J Clin Oncol 29 26 : , J Clin Oncol 31 22 : , Factors That Influence End-of-Life Care Decisions and Outcomes Overview One interpretation of the evidence summarized in the section on Quality of End-of-Life Care in Patients With Advanced Cancer is that patients with advanced cancer too often receive burdensome and potentially harmful treatments without much chance of benefit and to the detriment of receiving purposeful end-of-life EOL care.
Several notes of caution about the cited studies, however, are highlighted in the following: The cross-sectional design of most studies prevents conclusions about causality. Definitions of advanced cancer, median survival times of enrolled subjects, and study methodologies may all be relevantly different across studies, and uncontrolled or unrecognized confounders may skew reported correlations. Many of the potentially relevant factors were treated as primary or secondary outcomes or as only one variable in multivariate analysis.
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- Dying Matters Podcast | Hospice UK.
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- Our view on issues around assisted dying and end of life;
Thus, the relationships among patient-oncologist communication, health care decision making near the EOL, and outcomes are not always firmly established. Nonetheless, the evidence from multiple sources demonstrates plausible and compelling links. Factors unrelated to communication or decision making may influence the health care decisions of patients with advanced cancer near the EOL. Cited Studies Three very large, comprehensive studies provide a rich source of information for characterizing the relationships among markers of quality communication, decision making, health care decisions, and outcomes in patients with advanced cancer.
The Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments SUPPORT : This multisite Ohio, North Carolina, Massachusetts, Wisconsin, and California two-phase study evaluated an intervention to improve physician understanding of patient preferences, documentation and timing of do-not-resuscitate DNR orders, pain, time in intensive care, being comatose or receiving mechanical ventilation before death, and the use of hospital resources. A total of 4, patients were enrolled in phase I, and 4, were enrolled in phase II. The intervention focused on providing reliable information about prognosis, documenting patient and family preferences, and using a skilled nurse to educate patients and families and facilitate communication.
The Coping with Cancer CwC study: This prospective, longitudinal, multisite study of terminally ill cancer patients and their informal caregivers examined how psychosocial factors influence patient care and caregiver bereavement. Key eligibility criteria included a diagnosis of advanced cancer distant metastases and disease refractory to first-line chemotherapy and presence of an informal caregiver. The median overall survival of enrolled patients was 4.
- Customer Relationship Management Systems Handbook;
- Transitions Between Care Settings at the End of Life Among Older Homecare Recipients.
- Hospice New Zealand!
The Cancer Care Outcomes Research and Surveillance CanCORS Consortium: This study enrolled more than 5, people diagnosed with lung or colorectal cancer between and who were identified within weeks of their diagnoses by a rapid-ascertainment method. Patients or surrogates, if patients had died or were unavailable were interviewed via computer-assisted surveys 4 to 7 months after diagnosis. The medical records of consenting adults were also abstracted. Patient Demographics The goal of planning the transition to EOL care in a deliberate and thoughtful manner is to increase the likelihood that a person with advanced cancer will receive high-quality EOL care consistent with their informed preferences.
Age Cancer is a disease of older adults. Older patients were less likely to receive aggressive treatments. Seventy-three patients aged 70 to 89 years with metastatic colon cancer were interviewed about treatment decision making. Older women are more likely than younger women to receive palliative care near the EOL. One study reported that One study analyzed the relationships between age, treatment preferences, and treatment received in a cohort of deceased patients who were enrolled in CwC.
However, older patients who preferred life-prolonging therapies were less likely than younger patients to receive such treatments. Another study interviewed patients with advanced cancer before and after a visit with an oncology clinician to discuss scan results. Women were more likely to recognize the cancer as incurable and to accurately identify the stage of the cancer. Women were also more likely to report that discussions about life expectancy occurred.
Race A secondary analysis of CwC demonstrated that black patients were more likely to receive intensive treatments near the EOL. The frequency of high-intensity treatments near the EOL did not correlate with stated preferences and, unlike the case with white patients, EOL discussions did not decrease the likelihood of intensive treatments.
Another study analyzed interviews with terminally ill white and African American patients to determine whether the patient-reported quality of relationships with physicians correlated with advance care planning ACP and preferences for life-sustaining treatment LST. Patients of African American or Asian descent are less likely to enroll in hospice and more likely to receive aggressive treatments, including hospitalizations and ICU admissions, than are white patients.
Socioeconomic status Patients with Medicaid are less likely to receive hospice care than are patients insured through Medicare, and are more likely to die in acute-care facilities. Medicare beneficiaries enrolled in a managed care program were more likely to enroll in hospice and to enroll for longer periods of time. Patients often provide overly optimistic estimates of the likelihood of survival beyond 6 months. One group of researchers analyzed the prognostic understanding measured as an estimate of surviving beyond 6 months of adults with metastatic colorectal or lung cancer who were enrolled in SUPPORT.
Patients frequently fail to correctly report the goal of anticancer treatment. One group of researchers reported that at baseline, At a week assessment, fewer patients reported cure as a goal, but the difference was not significant. The results of this study are consistent with those of other studies reported between [ 21 ] and the present. Patients are often unaware of the terminal nature of the diagnosis of advanced cancer. However, patients who are aware of their terminal diagnosis have a higher quality of life QOL [ 22 ] and are more likely to receive care consistent with their preferences.
Patient Preferences Respect for patient preferences is essential to high-quality cancer care and to protecting patient autonomy. For example, a study [ 24 ] of patients with newly diagnosed advanced-stage lung cancer found that: Preference for information about prognosis Patients with life-limiting illnesses desire information about prognosis,[ 27 ] believe that such information may be provided without compromising hope,[ 28 ] and prefer that oncologists inquire about their preferences for such information.
Patients aged 70 to 89 years with metastatic colorectal cancer were interviewed about their preferred role in decision making. Preference for a passive role was more common among patients who were older or female or had a poorer performance status or newly diagnosed metastatic disease. Preference for palliative chemotherapy Several studies have identified a high prevalence of patient preference for chemotherapy before consultation with a medical oncologist. Preference for QOL or length of life As discussed in the introductory paragraph to the Patient Preferences section of this summary, patient preferences may be narrowly or broadly construed.
Given the lack of demonstrable survival benefit of chemotherapy in advanced cancer, the authors speculated that patients may not receive accurate information in the consultation that clearly delineates the goal of chemotherapy. Another study [ 40 ] interviewed outpatients with cancer all stages about their attitudes toward treatment. Patients also completed the QQQ. The investigators found that patients who were older, tired, or more negative valued QOL more than others. Patients who were within 6 months of diagnosis rated length of life as more important. It should be noted, however, that patients did not rank the importance of length relative to quality in this study.
A third study enrolled only patients with advanced cancer respondents and asked patients to rate the relative value of QOL or length of life. A preference for QOL correlated with older age, male gender, and increased levels of education. Patients with a preference for length of life also preferred less pessimistic communication from oncologists. Patient Goals of Care Discussions about goals of care with advanced-cancer patients are considered by many to be a critical component of planning the transition to EOL care.
Some investigators have used the phrase goals of care to identify the goals of disease-directed treatments. Perhaps it would be clearer if such goals were labeled goals of treatment. One study analyzed relevant publications to establish a categorization of relevant goals of care for patients with life-limiting illnesses.
Another study reported a qualitative analysis of prognostic communication in palliative care consultations. This suggests that treatment-related goals are often replaced by more personal goals once disease-directed treatment is not advisable. Recall of hospice discussions Hospice discussions increase the rate of hospice enrollment. The Nature of the Decision Decision to receive chemotherapy Patients with advanced cancer frequently receive multiple regimens of chemotherapy over the course of their treatment. Decision to limit treatment Most deaths resulting from advanced cancer are preceded by decisions to limit treatment.
References A controlled trial to improve care for seriously ill hospitalized patients. JAMA 20 : , Nov Am J Med 3 : , JAMA 21 : , JAMA 14 : , J Clin Oncol 31 5 : , J Clin Oncol 22 15 : , J Clin Oncol 25 33 : , J Clin Oncol 22 17 : , J Palliat Med 13 6 : , J Support Oncol 11 3 : , J Clin Oncol 27 33 : , Arch Intern Med 17 : , Smith AK, Davis RB, Krakauer EL: Differences in the quality of the patient-physician relationship among terminally ill African-American and white patients: impact on advance care planning and treatment preferences.
J Gen Intern Med 22 11 : , J Am Geriatr Soc 57 1 : , J Gen Intern Med 22 3 : , J Clin Oncol 31 20 : , Sharma RK, Dy SM: Documentation of information and care planning for patients with advanced cancer: associations with patient characteristics and utilization of hospital care. Am J Hosp Palliat Care 28 8 : , JAMA 17 : , Eur J Cancer Care Engl 14 5 : , Cancer 53 12 : , J Clin Oncol 28 11 : , J Clin Oncol 28 7 : , Interview study with lung cancer patients. Palliat Med 25 1 : , Gattellari M, Ward JE: Measuring men's preferences for involvement in medical care: getting the question right.
J Eval Clin Pract 11 3 : , Gerontologist 45 1 : , J Am Geriatr Soc 51 10 : , J Clin Oncol 23 6 : , Ann Oncol 16 7 : , J Clin Epidemiol 45 9 : , J Clin Oncol 24 7 : , J Clin Oncol 19 11 : , Semin Oncol 38 3 : , A prospective study explaining patients' treatment preference and choice.
Br J Cancer 89 12 : , JAMA 22 : , Ann Oncol 23 5 : , Eur J Cancer 40 2 : , Med Decis Making 16 2 : , Apr-Jun. J Clin Oncol 23 9 : , Cancer 12 : , Res Nurs Health 36 6 : , JAMA 11 : , J Clin Oncol 28 3 : , Psychooncology 21 7 : , J Sci Study Relig 37 4 : , Arch Intern Med 10 : , J Clin Oncol 28 28 : , J Clin Oncol 27 13 : , Potential Barriers to Planning the Transition to End-of-Life Care The preferences of patients with advanced cancer should, in large part, determine the care they receive.
One group of investigators studied 1, patients in the Cancer Care Outcomes Research and Surveillance Consortium and found that a significant majority of patients with advanced lung or colorectal cancer did not understand that treatment was not curative.
Sixty-nine percent of patients did not report understanding that chemotherapy was not at all likely to cure their cancer. Older patients and nonwhites were more likely to misunderstand; surrogates of patients were more likely to understand. They were unrelated to age, gender, educational level, or functional status. In a study of 80 surrogate decision makers recruited from the families of ICU patients, most were fairly accurate in their interpretations of quantitative information and less ambiguous qualitative estimates provided by ICU physicians.
Lack of Agreement Between Patients and Oncologists Multiple conversations between patients with advanced cancer and their oncologists should lead to an understanding about prognoses, goals, preferences, options, and the decision-making process. Understanding of prognosis One group of investigators analyzed the prognostic estimates of adults with metastatic colorectal or lung cancer who were enrolled in the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments SUPPORT and their physicians. Physician estimates were more calibrated with the observed survival than were the estimates of patients.
Patients who were more optimistic than their oncologists were more likely to prefer life-extending treatments. Goals of treatment Patients and oncologists frequently do not share an understanding of the goals of cancer treatment. Topics recalled from consultation Researchers reported that patients and oncologists frequently recalled different components of communication and decision making from discussions of phase I trials. Patient preference for decision-making role Oncology clinicians frequently do not correctly identify patient preferences for decision-making roles.
Assessment of patient performance status Physicians evaluate patient performance status PS in determining prognosis and in making treatment decisions. Oncologist Communication Behaviors This section summarizes the evidence that identifies deficits in the communication behaviors of oncologists treating patients who have advanced cancer. Observational studies of patient-oncologist communication Investigators reported a study of audiotaped consultations between one of nine oncologists and patients with advanced cancer. Most oncologists disclosed the noncurative intent of chemotherapy in advanced cancer, but few discussed alternatives to chemotherapy.
In However, patients were presented with information about life expectancy in only Oncologists rarely checked patient understanding. Essential elements of shared decision making were frequently missing. The participating oncologists frequently acknowledged the uncertainty of treatment benefit However, only Oncologists frequently use ambiguous or falsely reassuring language, such as inappropriately optimistic statements.
One group of researchers analyzed audiotapes of encounters between oncologists and patients in which the oncologists had provided a likelihood of cure using current treatments. Oncologists were more likely to make optimistic statements, but pessimistic statements were more likely to increase the degree of prognostic agreement. The authors concluded that the best communication strategy may include acknowledging that the tendency to be optimistic may interfere with patient understanding of prognosis, and striving to provide honest information as warranted by the prognosis.
Oncologists frequently do not discuss the anticipated survival benefit of chemotherapy in advanced cancer. One group of investigators demonstrated that in 26 of 37 analyzed consultations, the oncologist did not provide the patient with information about the potential survival gain of palliative i. A multisite, prospective, longitudinal cohort study reported that discussions about EOL care were not psychologically harmful. Patients with advanced cancer who answered affirmatively to the question, "Have you and your doctors discussed any particular wishes you have about the care you would want to receive if you were dying?
Another study found that patient anxiety caused by disclosure of information and decision making was transient or may have improved psychological adjustment. The amount of information disclosed by oncologists did not predict levels of patient anxiety. In another study, men with advanced cancer who estimated a lower likelihood of survival at 6 months had increased levels of anxiety and depression.
Thus, discussions about prognosis moderated the relationships with anxiety and depression and may have facilitated long-term psychological adjustment. A study found that explicit disclosure about prognosis and reassurance about nonabandonment were helpful to patients. Researchers studied how patients with breast cancer and healthy women reacted to two levels of prognostic disclosure and reassurance portrayed in four different video vignettes. The authors cautioned that the nature of the findings is experimental. Oncologists and shared decision making In surveys, oncologists are broadly supportive of the concept of shared decision making.
Oncologist attitudes toward EOL care Attitudes toward EOL care may also influence the communication and decision-making behaviors of oncologists. Multivariate analysis of determinants of the sense of burden identified the following covariates: Feeling that the patient was being deprived of hope. Reimbursement for Chemotherapy and Practice Economics Before , reimbursement for chemotherapy was at a price that greatly exceeded acquisition costs for medical oncologists.
Oncologists who practice in a fee-for-service setting or those who are paid a salary with productivity incentives are more likely to report that their income increases with increases in ordering chemotherapy or growth factors. Uncertainty About Options Other Than Disease-Directed Treatments A final barrier to planning the transition to EOL care may be confusing language when patients begin to ponder forgoing resuscitation and other life-prolonging interventions.
N Engl J Med 18 : , N Engl J Med 17 : , Cancer 98 1 : , J Clin Oncol 24 27 : , Ann Intern Med 5 : , Leukemia 18 4 : , JAMA 8 : , JAMA Oncol 2 11 : , Cancer 3 : , J Clin Oncol 29 1 : , Cancer 8 : , A controlled trial to improve care for seriously ill hospitalized patients. J Pain Symptom Manage 46 1 : , J Clin Oncol 20 2 : , Support Care Cancer 16 9 : , BMJ a, J Palliat Med 17 6 : , A study of cancer physicians' self-reports of prognosis disclosure.
J Clin Oncol 26 36 : , Cancer 4 : , J Palliat Med 15 1 : , J Clin Oncol 31 26 : , Palliat Med 23 5 : , Arch Intern Med 7 : , A vignettes study among oncologists. J Clin Oncol 20 17 : , Med Decis Making 31 3 : , May-Jun. Patient Educ Couns 84 2 : , J Palliat Med 11 6 : , Jpn J Clin Oncol 41 8 : , Health Aff Millwood 25 2 : , Mar-Apr. Mitchell JM: Urologists' use of intensity-modulated radiation therapy for prostate cancer. Support Care Cancer 21 3 : , Public attitudes toward palliative care Public attitudes toward palliative care depend on the description of the service.
Best Supportive Care The ability to safely administer multiple cycles of chemotherapy depends on a range of interventions to minimize adverse effects. Three points about the term supportive care are relevant to this section: Inadequate attention is paid to symptoms or health-related QOL during routine oncology evaluations. Although oncologists may overestimate their skillfulness, it is prudent to refer patients with burdensome symptoms to physicians who have a specific interest in health-related QOL and who have expertise in symptom management. The goal is always optimal supportive care; at times, a palliative care specialist may be required.
The term best supportive care has been used to describe the care received by patients when they were no longer receiving disease-directed treatment. It is unlikely that best supportive care—even when defined within protocols—would be confused with the specialized palliative care provided to patients with advanced cancer. Using the term supportive care may be preferable for referring clinicians and their patients because it avoids the negative connotation of the term palliative care.
Palliative Care Palliative care is an interdisciplinary model of care focused on patients with serious or life-threatening illnesses and their families. The goals of palliative care are to: Reduce illness burden, relieve suffering, and maintain QOL through interventions that maintain physical, psychological, social, and spiritual well-being. Hospice Hospice is a team-oriented approach to providing expert medical care, pain management, and emotional and spiritual support for patients whose life expectancy is no longer than 6 months. Hospice eligibility criteria The criteria for hospice eligibility are established by state and federal regulations.
Hospice may be indicated when a patient who has cancer: Presents with distant metastatic disease. Has progressed from an earlier stage of illness to metastatic disease and: - Shows continued decline in spite of therapy. Patient and caregiver barriers to hospice enrollment The following points summarize the many potential barriers to timely hospice enrollment: Patients and caregivers assume that hospice is only for the final days of life.
Preference for life-sustaining treatments may dissuade many patients from hospice enrollment. Patients and families may have negative perceptions of hospice. New anticancer therapies provide patients with new options and reasons for optimism, even though the actual clinical benefits may be few. Physician barriers to hospice enrollment The following points summarize physician barriers to hospice enrollment: Oncologists have difficulty making accurate predictions about estimated life expectancy and do not offer patients the opportunity to learn about hospice.
Referral to hospice may be interpreted as professional failure by the oncologist. Referral to hospice may signify unwelcome loss of control for the oncologist. A trend toward late hospice referral leads to burdensome transitions and patients spending 3 days or fewer in hospice. Oncologists may believe that hospice enrollment will hasten death; however, data do not support this concern.
Instead, the mean survival was significantly longer for hospice patients with lung and pancreatic cancer and marginally longer for hospice patients with colon cancer. A observational study from South Korea demonstrated that patients who were aware of their terminal illness and admitted to an inpatient palliative care unit had a median survival of 69 days. Survival was unaffected by admission to the intensive care unit, suggesting that patient-level characteristics, rather than medical interventions, influence survival. Oncologists fear that a hospice referral will be seen by the patient as abandonment.
Potential shortcomings of the hospice system Studies suggest that the hospice requirement that patients forgo disease-directed, potentially life-sustaining treatments may deprive patients in need of services. Hospice and resuscitation and other potentially life-sustaining interventions While a do-not-resuscitate status is not mandatory for enrollment in hospice, less aggressive medical care near the EOL is associated with higher patient-reported QOL and better bereavement adjustment.
Cancer 98 11 : , Cancer 9 : , Oncologist 16 1 : , Rockville, Md: Montgomery Hospice, J Am Geriatr Soc 54 3 : , J Clin Oncol 21 4 : , Mintzer DM, Zagrabbe K: On how increasing numbers of newer cancer therapies further delay referral to hospice: the increasing palliative care imperative. J Gen Intern Med 24 8 : , J Eval Clin Pract 9 3 : , J Palliat Med 7 3 : , JAMA 5 : , J Palliat Med 14 8 : , J Pain Symptom Manage 33 3 : , J Clin Oncol 29 18 : , J Clin Oncol 27 6 : , Health Aff Millwood 31 12 : , Lindrooth RC, Weisbrod BA: Do religious nonprofit and for-profit organizations respond differently to financial incentives?
The hospice industry. J Health Econ 26 2 : , 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. This section summarizes information relevant to the following strategies: Improving prognostication or prognostic communication. Improving Prognostication A comprehensive review of various strategies to improve prognostication is beyond the scope of this summary.
Patient-reported health-related quality of life QOL , which is a prognostic factor in patients with advanced cancer. 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, patients with newly diagnosed lung cancer. Older age, worse performance status, and advanced stage of disease were also significant predictors; the QOL measure maintained independent influence on multivariable analysis.
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. 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.
Accuracy was less for worst-case scenarios. Similar results have been demonstrated for advanced-stage lung cancer. 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.
The median OS of the cohort of patients was 11 months. Sixty-three percent of the patients had an observed survival ranging from half to double the oncologists' estimates. 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. Advance Care Planning ACP The 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. Several reasons might explain the underuse of ACP:[ 10 - 12 ] Initial studies of ACP did not demonstrate the anticipated improvement in outcomes.
There was a failure to transfer information about preferences between inpatient and outpatient or different venues of care. 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. 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.
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.
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.
Advance directives were not documented, were difficult to interpret, or were difficult for surrogates and physicians to follow. Interventions to Support Patient-Oncologist Communication Various interventions to support patient-oncologist communication have been studied.