End of life care requires improvement.1 3 15
Patients considered five factors to be important for a “good death”: managing symptoms, avoiding prolongation of dying, achieving a sense of control, relieving burdens placed on the family, and the strengthening of relationships.3 33
Furthermore, although traditional understanding of the benefits of advance care planning are respect for autonomy, preparation for possible future incapacity, and completion of formal advance directives, patients see the benefits of advance care planning to include preparation for end of life care and death, avoidance of prolongation of dying, strengthening of personal relationships, relieving burdens placed on family, and the informal communication of future wishes.3 34
This randomised, controlled trial shows that advance care planning carried out properly by trained non-medical staff improves end of life care by enabling patients’ wishes to be determined, documented, and respected at end of life. In this study, in the 92% of cases (33/36, table 3) where wishes were known, they were respected. This is similar to the Respecting Choices programme20
but different to other studies that have assessed similar outcomes.1 19
Essential elements of the programme responsible for the primary outcome
We specifically focused on a model with five key elements identified by others as crucial to successful advance care planning16 21 35
: trained facilitators, patient centred discussions, involvement of family in discussions, correctly filed documentation, and systematic education of doctors.
Patients welcome advance care planning and expect health professionals to initiate discussions.8 19 36
Our trained facilitators provided advance care planning for 81% of intervention patients; only four patients refused to participate. By using non-medical (nursing and allied health) staff as advance care planning facilitators, like others17 21 37
we made advance care planning more available and overcame the barrier of limited doctor time. Our findings dispel the common myth that patients are distressed by such discussion. Intervention patients were significantly more likely to be very satisfied with overall care in the hospital, the information provided, being listened to, and being involved in decision making (table 4). These findings on patient satisfaction, replicated elsewhere,26 35 36 38 39 40
are not surprising, given that this model of advance care planning is patient centred35
and encourages open discussion about patients’ goals of care, “what it means to live well,”41
and their values and beliefs.
Patients may also wish to document specific treatment preferences for cardiopulmonary resuscitation and prolongation of life. However, patients often poorly understand medical care,19
including cardiopulmonary resuscitation,42
and may overestimate their probabilities of survival.3
Part of the focus during advance care planning is on realistic and achievable goals of care3
and improving the patient’s understanding of their medical situation. Patients vary their choices when informed about the likelihood and severity of outcomes, including those related to functional and cognitive disability.43 44
Like others, 15 18 35
we found it more useful for patients to focus on goals for care rather than on specific treatments for particular circumstances.
The third crucial element was to include the family in the discussion. Families were present in 72% of discussions on advance care planning. Family presence increased the likelihood that the patient would appoint a surrogate or complete an advance care plan, or both (P<0.001, table 2). Appointing a surrogate is important13 22 34 35 41
as it increases concordance between the wishes of a patient and the surrogate’s knowledge of those wishes35 39 45
and diminishes the sense of burden when end of life decisions are required.
The completion and correct, prominent filing of advance care planning documentation assists doctors to make decisions on end of life treatment. Documentation was completed in most of the discussions on advance care planning and was correctly filed in the medical records. Our findings are similar to those of a previous study,20
where 85% of decedents had advance directive documents and most were in the patients’ records.
Education of doctors and other staff about the importance of advance care planning and end of life care is important,6 12 13 21
particularly in improving compliance with patients’ wishes.46
The advance care planning facilitators involved the treating doctors in discussions on the patients’ medical condition, possible treatments, and prognosis, as required, and also ensured medical staff were aware of any end of life wishes that patients expressed (verbally or in writing), especially if there was a wish to limit treatment. Only one patient in the intervention group and two in the control group had wishes that were known and not followed. This is a similar finding to others.20
Most patients who expressed an end of life care wish in this study did not want cardiopulmonary resuscitation or life prolonging treatment. Survival at six months was similar in both groups, which discounts the suggestion that advance care planning may be promoted as a mechanism to limit medical treatment.47
Four of these five key elements were absent from the SUPPORT study, a project that relied on a research nurse to relay information verbally to the treating doctor about a patient’s preference for cardiopulmonary resuscitation, but which did not facilitate patient centred discussions, involve the patient’s surrogate, and ensure that the treating doctor was aware of the patient’s advance care plan when end of life decisions were made.1
Legislation supports doctors following a patient’s wishes, even if the patient wants to limit treatment. Although statutory law in Australia6
supports the legal appointment of surrogates, it is common law that recognises the right of competent adults to refuse medical treatment.48
Thus common law provides the main legal support for the ethical principle of patient autonomy and the concept of advance care planning.
Other study outcomes
Although overall the groups did not differ in site of death, the likelihood of dying in an intensive care unit differed significantly (none in intervention group, four in control group). The four control patients who died in the intensive care unit had multiple important pre-existing medical conditions, and each received many invasive procedures until shortly before death. It seems that in each of these cases, death was inevitable and, on review of the patient’s files, there was evidence that some of the interventions received may have been unwanted. End of life decision making also differed significantly between the groups, with more patients involved in decision making in the intervention group (table 3). This is not surprising, given that these patients had time to reflect on their views and document their wishes and that they and their family felt more empowered to express a view on the medical treatment plan when required.
Emotional trauma was reduced in the family members of intervention patients who died. An impact of events scale score of more than 30 is associated with a high risk of developing post-traumatic stress disorder.23 32
Scores of more than 8 on the hospital anxiety and depression scale subscales for depression and for anxiety are associated with clinically significant depression and anxiety.49
Scores of this level occurred only in the family members of control group patients who had died. Our programme involved surrogates throughout advance care planning, thereby increasing their knowledge and understanding of patients’ wishes and reducing the burden of making difficult end of life decisions on behalf of patients. Advance care planning significantly reduced symptoms of post-traumatic stress, anxiety, and depression in family members. Furthermore, family members of intervention patients were more likely to be very satisfied with the quality of the patient’s death from their perspective and the belief that the patient would also have been satisfied with the quality of death (table 3).
Although making decisions on end of life care can be traumatic,23 24 25
others have also found that providing information to family members and involving them in discussions reduces the symptoms of post-traumatic stress, anxiety, and depression,24 26
and that advance directives can reduce the stress placed on families.25
Strengths and limitations of the study
This study has strengths and limitations. The intervention was found to be both logistically possible and successful in a patient population representative of that in most hospitals of developed nations. The effect size was large and the findings were internally consistent, with an improvement in knowledge of patients’ wishes, patient and family satisfaction with end of life care, and a reduction in stress, anxiety, and depression in family members of those who died.
Although we excluded non-English speakers and non-competent patients, such patients are likely to be particularly underserved by routine care and so it is reasonable to expect that the intervention may have even greater benefits in these groups. Although this model of advance care planning can be carried out with family members of non-competent patients, evaluating outcomes in this group was outside the scope of this study. The high proportion of non-competent elderly patients admitted for medical treatment underscores the importance of giving patients the opportunity for advance care planning while they are still able to make decisions for themselves. Although we excluded patients aged less than 80, the experience in our hospital is that advance care planning is successfully carried out in younger patients, with a higher proportion of patients competent to do so.
The questionnaire researcher was blinded to patient allocation, but the occasional responses of participants made patient allocation obvious. The researcher still recorded all questionnaire responses objectively, however, and this did not affect the primary outcome measure.
This was a single centre study of a complex intervention,50
which will be potentially influenced by local cultural and systemic factors. However, despite this we believe that our model of advance care planning is likely to be generalisable to other healthcare settings. The Respecting Patient Choices model of advance care planning is derived from Respecting Choices, a programme that has been successfully implemented in multiple health services in the United States, as well as Canada, Germany, Spain, and Singapore.28
Furthermore, the Respecting Patient Choices programme has been implemented into health services in each Australian state and territory.12
We designed the study to follow all patients for six months after randomisation. It was not feasible to follow the surviving patients further as advance care planning was subsequently provided to the surviving control patients.
Implications for clinicians and policy makers
We believe our study highlights several factors that are important for both clinicians and policy makers. Firstly, the focus of advance care planning needs to be on improving communication between patients, their families, and doctors. Although documentation is often completed during the process of advance care planning, documentation alone is unlikely to improve outcomes. Secondly, advance care planning needs to be a coordinated approach involving the various members of the patient’s treating health providers, including a trained advance care planning facilitator. Furthermore, advance care planning needs to become a part of usual care, and mechanisms need to be in place to ensure that it is offered to patients. Finally, successful advance care planning requires a change in systems to ensure that it occurs, the plans are readily available, and the care a person receives reflects their wishes. Health services need to develop policy around advance care planning and end of life care.
A coordinated, systematic model of patient centred advance care planning using non-medical advance care planning facilitators assists in identifying and respecting patient’s wishes about end of life care, improves such care from the perspective of the patient and the family, and diminishes the likelihood of stress, anxiety, and depression in surviving relatives.
What is already known on this topic
- End of life care is poor and needs to be improved
- Focusing on the completion of advance directives alone does not improve end of life care
- Involving surrogates in discussions on advance care planning improves the likelihood that they will know the patient’s end of life wishes
What this study adds
- Coordinated advance care planning improves end of life care
- Advance care planning reduces the incidence of anxiety, depression, and post-traumatic stress in surviving relatives
- Advance care planning improves patient and family satisfaction with hospital care