There is evidence that ACP positively impacts the quality of end-of-life care.
Brinkman-Stoppelenburg et al., conducted a systematic review of the literature in 2014 to gain insight into the effects of ACP and the effectiveness of different approaches to such planning. The databases were searched for published literature from 2000-2012. One hundred thirteen articles were ultimately considered relevant for the review. For each study, the level of evidence was graded. Most studies were observational (95%), were done in the United States (US) (81%), and were done in hospitals (49%) or nursing homes (32%). Do-not-resuscitate (DNR) orders (39%) and written advance directives (34%) were most often studied. ACP was often found to decrease life-sustaining treatment, to increase hospice and palliative care use, and to prevent hospitalization. Complex ACP increased compliance with patients’ end of care wishes.¹
Teno et al., 2007, examined the role of advance directives during the 10 year period post Patient Self-Determination Act. This was done as a follow up survey to a mortal outcome for 1587 patients who had died in a nursing home, hospital or at home. Family members or other knowledgeable informants, by phone call, provided answers related to questions about the use of written advance directives, use of life-sustaining treatment, and quality of care based on symptom relief/respect/supported shared-decision making/coordination of care/necessary family support from an emotional and information standpoint. Results revealed 70.8% had an advance directive. Persons who died at home with hospice or in a nursing home were more likely to have such a directive. Those with an advance directive were less likely (17% vs.27%) to have had a feeding tube or to have used a respirator in the last month of life (11.8% vs. 22%). Families reporting no presence of an advance directive also reported more concerns with physician communication (AOR=1.4, 95% CI) and with being informed of what to expect (AOR=1.2, 95% CI). However, opportunities for improvement were identified; as even with advance directives, these interview results demonstrated 1 in 4 reporting an unmet need in pain, 1 in 2 reporting inadequate emotional support for the patient, and 1 in 3 reporting inadequate family emotional support.2
Molloy et al, conducted a randomized controlled trial (RCT) reviewing the effects of a systematic implementation of an advance directive program in nursing homes. This trial included 1292 residents in 6 Ontario nursing homes with more than a hundred residents each over the time period of June 1, 1994 through August 31, 1998. The advance directive program was called “Let Me Decide” and specifically educated staff, residents and families about advance directives. It offered competent residents or next-of-kin an advance directive with choices for care related to life-threatening illness, cardiac arrest, and nutrition. The 6 nursing homes were pair-matched on key characteristics and 1 home per pair was randomized to take part in the program. The control nursing homes continued with their usual policies. Of the 527 participating residents in intervention nursing homes, 49% of competent residents and 78% of families for those who were not competent, completed advance directives. Satisfaction was not significantly different between intervention and control facility participants with a 95% CI, and yet the residents in intervention nursing homes had fewer hospitalizations (mean, 0.27 vs. 0.48, p=0.001) and less resource use (average total cost per patient of $3490 vs. $5239, p=0.01). The proportion of deaths in intervention (24%) and control (28%) was similar (p=0.20). The investigators concluded that systematic implementation of a program to understand directives in advance did reduce health care service utilization without affecting satisfaction or mortality.3
Detering et al, conducted an RCT to assess the impact of ACP on end-of-life care in elderly patients. This was a single center study in a university hospital in Australia. Three hundred nine legally competent patients, aged 80 and older, participated and were followed for 6 months or until their deaths. These participants were randomized to receive usual care or to have that usual care supplemented by facilitated ACP. This planning was designed to reflect patient goals, values and beliefs along with identifying future treatment preferences and surrogates and documentation of same. The primary outcome was whether a patient’s end-of-life desires were known and honored. Other outcomes included patient and family satisfaction with hospital stays and levels of stress/anxiety/depression in relatives of patients who had died. One hundred fifty-four of the 309 participants were randomized to ACP. Eighty-one percent received that planning and 84% did express wishes and/or appointed a surrogate. Of the 56 who died by 6 months, end-of-life wishes were much more likely to be known and followed in the intervention group (25/29, 86%) compared with the control group (8/27, 30%; p<0.001). In the intervention group, family members of decedents reported less stress (intervention group-5 and control group-15, p<0.001), less anxiety (intervention group-0 and control group-3, p=0.02), and less depression (intervention group-0 and control group-5, p=0.002). Patient and family satisfaction was higher in the intervention group. The authors concluded that ACP improves end-of-life care and patient and family satisfaction.4
Another study by Wright et al., out of the Dana Farber Cancer Institute recognized the difficulties associated with discussions about death and therefore, studied whether end-of-life discussions with physicians led to fewer aggressive interventions at a later date. This was a US multi-site prospective, longitudinal cohort study of patients with advanced cancer and their informal caregivers for a total of 332 dyads. The duration of the study was from September 2002 through February 2008. Patients were followed from enrollment to death for a median of 4.4 months. Bereaved caregivers were assessed a median of 6.5 months later for psychiatric illness and quality of life. The main outcome measure related to ventilation/resuscitation and hospice in the final week of life. Secondary outcomes include patient mental health and caregiver adjustment. Thirty-seven percent of patients reported end-of-life discussions before baseline. These discussions were not associated with higher rates of depression (8.3% vs. 5.8%, AOR=1.33; CI 95%) or more worry (McGill score 6.5 vs. 7, p=0.19). End-of-life discussions were associated with lower rates of mechanical ventilation (1.6% vs. 11%), resuscitation (0.8% vs. 6.7%), ICU admission (4.1% vs. 12.4%), and earlier hospice enrollment (65.6% vs. 44.5%). In adjusted analyses, more aggressive medical care was associated with worse patient quality of life (6.4 vs. 4.6; F=3.61, p=0.01) and higher risk of depression in caregivers (adjusted OR 3.37, 95% CI). Longer hospice stays were actually associated with better patient quality of life (mean score 5.6 vs. 6.9; F=3.70, p=0.01) and better patient quality of life correlated with better caregiver quality of life later (beta= 0.20, p=0.001).5
A systematic literature review (2008-2012) of the contextual factors influencing uptake of ACP was published in 2014 by Lovell and Yates. ACP was discussed as an iterative process of discussion, decision making and documentation about end-of-life care. Twenty-seven eligible studies were appraised using National Institute of Health and Care Excellence Quality Appraisal Checklists. Iterative thematic synthesis was used to group results. Results noted greater uptake of ACP with patients of an older age, with college degree, with diagnoses of cancer, with greater functional impairment, with Caucasian ethnicity, with a better understanding of poor prognosis, and with care provided by a palliative care specialist. Barriers included non-malignant diagnoses, having dependent children, African American ethnicity, and an uncertainty about ACP and its legal status. Patients’ previous illness experiences, preferences and attitudes also influenced use of ACP.6