Care Decisions in the Final Weeks, Days, and Hours of Life
The Decision to Discontinue Chemotherapy
A significant proportion (approximately 30%) of patients with advanced cancer continue to receive chemotherapy toward the end of life (EOL), including a small number (2%–5%) who receive their last dose of chemotherapy within 14 days of death.[1-3] Chemotherapy administered until the EOL is associated with significant adverse effects, resulting in prolonged hospitalization or increased likelihood of dying in an intensive care unit.[4,5] Thus, the lack of definite or meaningful improvement in survival leads many clinicians to advise patients to discontinue chemotherapy on the basis of an increasingly unfavorable ratio of benefit to risk.
Ultimately, the decision to initiate, continue, or forgo chemotherapy is made collaboratively and is consistent with the expected risks and benefits of treatment within the context of the patient's goals of care. However, the following reasons independent of the risks and benefits may lead a patient to prefer chemotherapy and are potentially worth exploring:
- Patients with cancer express a willingness to endure more complications of treatment for less benefit than do people without cancer.
- Patients report that receiving chemotherapy facilitates living in the present, perhaps by shifting their attention away from their approaching death. However, patients want their health care providers to inquire about them personally and ask how they are doing.
- Patients and physicians may mutually avoid discussions of options other than chemotherapy because it feels contradictory to the focus on providing treatment.
The Decision to Enroll in Hospice
Patients with advanced cancer who receive hospice care appear to experience better psychological adjustment, fewer burdensome symptoms, increased satisfaction, improved communication, and better deaths without hastening death.[9-12] The rate of hospice enrollment for people with cancer has increased in recent years; however, this increase is tempered by a reduction in the average length of hospice stay. Because of the association of longer hospice stays with caregivers’ perceptions of improved quality of care and increased satisfaction with care, the latter finding is especially concerning.[13,14]
Multiple patient demographic factors (e.g., younger age, married status, female gender, white race, greater affluence, and geographic region) are associated with increased hospice enrollment. In one study, however, physician characteristics were more important than patient characteristics in determining hospice enrollment. This may reflect the observation that patients concede more control to oncologists over time, especially if treatment decisions involve noncurative chemotherapy for metastatic cancer.
There are many potential barriers to timely hospice enrollment. Barriers are summarized in the following paragraphs on the basis of whether they arise predominantly from the perspective of the patient, caregiver, physician, or hospice, including eligibility criteria for enrollment. The purpose of this section is to provide the oncology clinician with insights into the decision to enroll in hospice, and to encourage a full discussion of hospice as an important EOL option for patients with advanced cancer. The related study  provides potential strategies to address some of the patient-level barriers.
Patient-level barriers: Patients often express a sense that it would be premature to enroll in hospice, that enrolling in hospice means giving up, or that enrolling in hospice would disrupt their relationship with their oncologist. The difficulty in recognizing when to enroll in hospice may explain the observations that the trend in increasing hospice utilization has not led to a reduction in intensive treatment, including admission to intensive care units at the EOL.[18,19]
Patients may agree to enroll in hospice in the final days of life only after aggressive medical treatments have clearly failed. Given the likely benefit of longer times in hospice care, patient-level predictors of short hospice stays may be particularly relevant. One group of investigators conducted a retrospective cohort study of 64,264 adults with cancer admitted to hospice. Sixteen percent stayed 3 days or fewer, with a range of 11.4% to 24.5% among the 12 participating hospices. The following factors (and odds ratios [ORs]) were independently associated with short hospice stays in multivariable analysis:
- Male sex (OR, 1.22).
- Married status (OR, 1.23).
- Age 65 years or older (OR, 0.90).
- Nonwhite ethnicity (OR, 0.89).
- Hematologic malignancy (OR, 1.52).
- Nursing home residence (OR,1.52).
- Medicaid insurance (OR, 0.83).
Caregiver-level barriers: In a survey of 53 caregivers of patients who died of lung cancer while in hospice, only 35% of caregivers felt that patients should have received hospice care sooner. The highest rates of agreement with potential reasons for deferring hospice enrollment were for the following three survey items:
- Continued anticancer treatments (63%).
- A decline in health that was too rapid to allow earlier use of hospice (55%).
- Unfamiliarity with hospice services before enrollment (42%).
Only 22% of caregivers agreed that the family member delayed enrollment because enrolling in hospice meant giving up hope.
Physician-level barriers: In a survey of 273 physicians, 65% agreed that a barrier to hospice enrollment was the patient preference for simultaneous anticancer treatment and hospice care. Almost half of physicians believed (incorrectly) that patients must have do-not-resuscitate and do-not-intubate orders in place to qualify for hospice. The lack of timely discussions with oncologists or other physicians about hospice care and its benefits remains a potentially remediable barrier to the timing of referral to hospice.[22-24]
Hospice-level barriers: The Medicare hospice benefit requires that physicians certify patients’ life expectancies shorter than 6 months and that patients forgo curative treatments. Patients who are enrolled in hospice receive all care related to their terminal illnesses through hospice, although most hospice reimbursement comes through a fixed per diem. Thus, hospices may have additional enrollment criteria.
One group of investigators conducted a national survey of 591 hospices that revealed 78% of hospices had at least one policy that could restrict enrollment. Sixty-one percent of patients could not be receiving chemotherapy, 55% could not be receiving total parenteral nutrition, and 40% could not be receiving transfusions. Only 8% restricted enrollment of patients receiving tube feedings. The percentage of hospices without restrictive enrollment practices varied by geographic region, from a low of 14% in the East/West South Central region to a high of 33% in the South Atlantic region.
A further challenge related to hospice enrollment is that the willingness to forgo chemotherapy does not identify patients who have a high perceived need for hospice care. Investigators conducted conjoint interviews of 300 patients with cancer and 171 family caregivers to determine the perceived need for five core hospice services (visiting nurse, chaplain, counselor, home health aide, and respite care). Patients willing to forgo chemotherapy did not have different levels of perceived needs. In a multivariable model, the following patient factors predicted a greater perceived need for hospice services:
- African American ethnicity.
- Less social support.
- Worse functional status.
- More psychological symptoms.
The following family factors predicted a greater perceived need for hospice services:
- Worse caregiver self-reported health.
- Caregiver working outside the home.
- Worse patient functional status.
Choosing the Desired Place of Death
Many patients with advanced-stage cancer express a desire to die at home, but many will die in a hospital or other facility. Patients who die at home, however, appear to have a better quality of life than do patients who die in a hospital or intensive care unit, and their bereaved caregivers experience less difficulty adjusting. Dying at home is also associated with better symptom control and preparedness for death and with caregivers’ perceptions of a higher-quality death.
Enrollment in hospice increases the likelihood of dying at home, but careful attention needs to be paid to caregiver support and symptom control. One group of investigators analyzed a cohort of 5,837 hospice patients with terminal cancer for whom the patient’s preference for dying at home was determined. Of the 5,837 patients, 4,336 (79%) preferred to die at home. In multivariable analysis, the following factors (with percentages and ORs) were correlated with the likelihood of dying at home:
- At least one hospice visit per day in the first 4 days (61% vs. 54%; OR, 1.23).
- Married status (63% vs. 54%; OR, 1.35).
- Advance directive available (65% vs. 50%; OR, 2.11).
- Moderate or severe pain (43% vs. 69%; OR, 0.56).
- Better functional status (OR, 0.53).
However, not all patients prefer to die at home, e.g., patients who are unmarried, nonwhite, and older. Thus, the oncology clinician strives to facilitate a discussion about preferred place of death and a plan to overcome potential barriers to dying at the patient’s preferred site.
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- Buiting HM, Terpstra W, Dalhuisen F, et al.: The facilitating role of chemotherapy in the palliative phase of cancer: qualitative interviews with advanced cancer patients. PLoS One 8 (11): e77959, 2013. [PUBMED Abstract]
- Buiting HM, Rurup ML, Wijsbek H, et al.: Understanding provision of chemotherapy to patients with end stage cancer: qualitative interview study. BMJ 342: d1933, 2011. [PUBMED Abstract]
- Addington-Hall JM, O'Callaghan AC: A comparison of the quality of care provided to cancer patients in the UK in the last three months of life in in-patient hospices compared with hospitals, from the perspective of bereaved relatives: results from a survey using the VOICES questionnaire. Palliat Med 23 (3): 190-7, 2009. [PUBMED Abstract]
- Wallston KA, Burger C, Smith RA, et al.: Comparing the quality of death for hospice and non-hospice cancer patients. Med Care 26 (2): 177-82, 1988. [PUBMED Abstract]
- Connor SR, Pyenson B, Fitch K, et al.: Comparing hospice and nonhospice patient survival among patients who die within a three-year window. J Pain Symptom Manage 33 (3): 238-46, 2007. [PUBMED Abstract]
- Wright AA, Keating NL, Balboni TA, et al.: Place of death: correlations with quality of life of patients with cancer and predictors of bereaved caregivers' mental health. J Clin Oncol 28 (29): 4457-64, 2010. [PUBMED Abstract]
- Teno JM, Shu JE, Casarett D, et al.: Timing of referral to hospice and quality of care: length of stay and bereaved family members' perceptions of the timing of hospice referral. J Pain Symptom Manage 34 (2): 120-5, 2007. [PUBMED Abstract]
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- Keating NL, Herrinton LJ, Zaslavsky AM, et al.: Variations in hospice use among cancer patients. J Natl Cancer Inst 98 (15): 1053-9, 2006. [PUBMED Abstract]
- Keating NL, Beth Landrum M, Arora NK, et al.: Cancer patients' roles in treatment decisions: do characteristics of the decision influence roles? J Clin Oncol 28 (28): 4364-70, 2010. [PUBMED Abstract]
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- Bergman J, Saigal CS, Lorenz KA, et al.: Hospice use and high-intensity care in men dying of prostate cancer. Arch Intern Med 171 (3): 204-10, 2011. [PUBMED Abstract]
- Wright AA, Hatfield LA, Earle CC, et al.: End-of-life care for older patients with ovarian cancer is intensive despite high rates of hospice use. J Clin Oncol 32 (31): 3534-9, 2014. [PUBMED Abstract]
- O'Connor NR, Hu R, Harris PS, et al.: Hospice admissions for cancer in the final days of life: independent predictors and implications for quality measures. J Clin Oncol 32 (28): 3184-9, 2014. [PUBMED Abstract]
- Ford DW, Nietert PJ, Zapka J, et al.: Barriers to hospice enrollment among lung cancer patients: a survey of family members and physicians. Palliat Support Care 6 (4): 357-62, 2008. [PUBMED Abstract]
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