Half of patients who died in the years 2018 and 2018 had at least one indicator of ACEOL; only 1/3 were seen greater than 90 days prior to death. A quarter of the patients had completed ADs, most were completed > 90 days prior to death. Documented ADs reduced ACEOL by reducing the number of patients receiving chemotherapy at the end-of-life and ICU admission. ADs completed at any point in time did reduce ACEOL though few though were completed < 90 days before death. Palliative care consultation > 90 days before death reduced ACEOL by reducing chemotherapy given in the last month of life.
Completion of ADs reduces aggressive care at the end of life. This requires discussions about patient values and an understanding of prognosis. End-of life-discussions are more likely to have occurred for those with an AD. Prognostic awareness occurs in 49% of patients with an advanced illness but this varied based upon country.17 Lack of prognostic awareness and inaccurate prognostication are associated with ACEOL.6,18−21 Oncologists tend to be optimistic in their prognostication.22 Hence, they may put off AD discussions until late in the course of cancer. “ Hoping for the best but planning for the worst” may be an important way of approaching patients about personal values in light of an incurable illness with completion ADs in a timely fashion even if a timeframe of survival is not discussed or does not want to be discussed by patients.23
In a retrospective review of patients with advanced cancer, completion of ADs greater than 90 days before death reduced rehospitalization within 90 days of death (odds ratio 0.21:90 5% CI 0.12 to 0.37).24 A second retrospective study of women with advanced ovarian cancer found that end-of-life discussions greater than 30 days before death reduced chemotherapy in the last 14 days of life, reduced hospitalizations within 30 days of death and increased the number of hospice days.25 In a large cohort study of lung and colon cancer patients, 39% of end-of-life discussions took place in the last 30 days of death. For the subset in which discussions took place greater than 30 days before death there was a reduction in all indicators of ACEOL except ICU admissions.6 The Cancer Care Outcomes Research and Surveillance Consortium study found that the median time between end-of-life discussions and death was 33 days suggesting that for many there is a lost opportunity to discuss choices at the end-of-life.26Also, a significant proportion of patients do not engage or do not want to engage in end of life discussions and a significant proportion of end of life discussions occur under crisis conditions in the last 30 days of life. Less than half of physicians know their patients’ preferences for end-of-life care including resuscitation.6,27−30 Completion of ADs prior to hospitalization is preferred. Most patients prior to admission have decision-making capacity but half of advanced cancer patients lose decision making capacity in hospital. If then a surrogate becomes the decision-maker in the place of patient, there is a greater risk that ACEOL will take place.31 Decisions regarding resuscitation prior to hospitalization reduces the number resuscitations that occur after hospitalization, reduces intensive care unit length of stay and hospital mortality.32
Our findings are consistent with two systematic reviews.33,34. Both reviews demonstrated that end-of-life discussions and advanced care planning reduces ACEOL and healthcare expenditures. Reduction in intensive care utilization (odds ratio 0.26–0.68) and chemotherapy (odds ratio 0.41–0.57) were two major benefits.
Many patients have end- of-life discussions but not recorded in the medical record. One study found that only 48% were recorded in the medical record and 23% were known only through interviewing the surrogate decision-maker.6 It is possible that more patients had Ads in our study but were not documented in the medical record
Seventy percent of patients who died of were cancer were seen by our palliative care service but only 1/3 were seen greater than 90 days prior to death. Palliative care consultations within 90 days of death were associated with increased ACEOL ; only those patients initially seen greater than 90 days prior to death had a significant reduction in ACEOL.
Half of patients dying of cancer in our study had at least one indicator of aggressive care and is consistent with a retrospective study of women with gynecological cancers. In this study 41% had at least one indicator.35 Younger patients are more likely to receive chemotherapy at the end of life. Comorbidities and gender did not play a role in ACEOL in our study Comorbidity has been published as a risk factor for ACEOL.36 Gender in in several other studies was found to be different with males undergoing more aggressive care and women received less ACEOL.2,3,10 This may reflect differences in referral and individual oncologist’s practice style.
A small study of patients with cervical cancer found that the median time frame for palliative care referral before death was 2.3 months with 34% referred within the last month of life.37 A systematic review found the average time from palliative care consultation to death was 18.9 days.16.
In a large review of patients with advanced gastrointestinal cancers (n = 34,630) the median time from palliative care to death was 76 days and 46% had palliative care services initiated greater than 90 days prior to death. Twelve percent had services initiated within 7 days of dying.12 A retrospective review of patients with pancreatic cancer found the median survival time from palliative consultation was 75 days, only 52% had palliative care consultations.10
We uniquely found that palliative care consultations within 90 days of death was associated with more ACEOL which differs from previously published studies.10,12. Few studies have looked at the time- frame of palliative care and ACEOL. This likely reflects crisis intervention at the end-of-life in patients who have had multiple hospitalizations, emergency room visits and may be in the ICU in which primary services feel a goals of care discussion is needed or a transition to hospice or comfort care in needed. Patients are often seen by our service for the first time after several emergency department visits or readmission after receiving chemotherapy or for reasons of cancer. Our experience is not unique3.. A retrospective study of patients with pancreatic cancer found that late palliative care consultations defined as occurring less than 90 days prior to death was associated with an 18% greater use of the emergency department, a 12.5% greater number of hospitalizations and increased chemotherapy in the last 30 days of life.38
We observed a robust reduction in ACEOL when a palliative care consultation took place greater than 90 days before death. Though there is no universal definition of “early palliative care”, we believe that > 90 days before death has practical utility. Others have defined “early palliative care” as consultations > 90 days to death to within 8 weeks of the diagnosis of metastatic disease.3,4,11 Two studies suggest that the number of contacts may be an important factor to early palliative care.10,39.Increased contacts between the patient and palliative services reduce ACEOL and with > 90 days of time, the number of contacts are likely to increase which allows for the development of trusting relationship, time for symptom management and end-of-life discussions. Two studies suggest that the number of contacts are an important factor in early palliative care.10,39 A systematic referral of patients with incurable cancer facilitates early referral and is more likely reduce ACEOL.9
We found that 64% of patients who experience ACEOL receive new chemotherapy within 1 month of death and nearly 30% continue chemotherapy within 2 weeks of death. Frequency of other indicators is consistent with the literature.40 A retrospective study of patients who received chemotherapy within 3 months of death found that 52% were treated with chemotherapy in the last month of life and 29% in the last 2 weeks of life.41 Another study, contrary to ours, found that though hospital deaths were more frequent than ours (47.7%), chemotherapy within 14 days of death was only 12.9%, 9.1% had new chemotherapy started within 30 days of death.42 Maltoni and colleagues found that early palliative care defined as palliative care within 8 weeks of diagnosis reduced chemotherapy from 27.8–18.7% in the last month of life.9 A second study demonstrated a reduction in late chemotherapy from 24.5–16.7% with early palliative care defined as palliative care greater than 90 days before death.38 Multiple other studies have demonstrated the same though not consistently.10–12, 37
. Even though the prognosis may be the same regardless of age, younger patients are more likely to receive anti-cancer therapy within the last month of life. A Finnish study found that 33% of patients less than 50 years old received chemotherapy in the last month of life versus 10% of those 80 years or older.43
The use of chemotherapy within 14 days of death has increased over 2 decades.1 One reason, is that there are more treatment options. There can be unrealistic expectations of chemotherapy or fear of “doing nothing” on the part of the patient and physician.21 A
This study has several weaknesses. We defined advanced cancer patients by their diagnosis and by receiving chemotherapy. Some patients may have received adjuvant chemotherapy and died from other causes rather than their cancer. The association of ACEOL with palliative care < 90 days may reflect a referral pattern of sicker patients though the CCI did not differ between groups. We were unable to obtain hospice referral data which is one of the indicators of ACEOL and hence some patients in the “nonaggressive care” group may actually have been referred to hospice later or not at all and would have been part of the group experiencing ACEOL. The use of palliative care services early in the course of advanced cancer and completed ADs may reflect a patient’s value which emphasizes quality of life and less ACEOL. Finally, there could be unmeasured confounders that we did not include that could have influenced the results. This was a single institution study and so may not be generalizable.