Advance Care Planning Dr Karen Ryan, Consultant in Palliative Medicine Clinical Lead, Palliative Care Programme
What is Advance Care Planning? A process of discussion and reflection about goals, values and preferences for future treatment in the context of an anticipated deterioration in the patient's condition with loss of capacity to make decisions and communicate these to others. http://www.scotland.gov.uk/publications/2009/03/06140257/4
Why are ACPs important? There is substantial evidence that the treatment people would choose at the end of life commonly is different from the treatment they receive. Too often individuals receive more aggressive care than they desire. Individuals preferences for where they wish to spend the end of their lives are also often not met.
Focus on the US: Well-publicized legal cases in the 1970s and 1980s focused the public s attention on withdrawing life-sustaining treatments from individuals who had lost decision making capacity. Two cases involving young women (Karen Ann Quinlan and Nancy Cruzan) challenged the laws regarding end-of-life decisions. The resultant model of care assumes that patients who lose decision-making capacity are more likely to receive the care they want if they choose a surrogate decision maker, document their wishes in advance, or both. To promote this model Congress passed the Patient Self- Determination Act in 1991, hoping to improve end-of- life care through the use of advance directives.
However... Early evidence suggested that that conventional advance directives have not been as helpful as proponents hoped. Advance Directives and Advance Care Planning Report (2008). The use of ADs and the attempts to promote ACP had largely failed. Mere completion of legal documents, such as a living will or even a power of attorney for health care, and most efforts to promote them are not associated with markedly better care at the end of life.
Interventions to Promote ACP Completion A variety of interventions have been tested to promote engagement in advance care planning and completion of advance directives. Such interventions usually aim to change a particular aspect of an individual s health behaviour or a physician s practice pattern. The majority of interventions have been educational in nature and focused on patients and providers. Recently, multi-component interventions have demonstrated promise.
Change in focus... From focusing on the static act of advance directive completion To a process: That involves ongoing communication, Which emphasizes an iterative process over time to discern an individual s priorities, values, and care goals And engages a proxy and others who will knowledgeably participate in the health care decision making.
Models of best practice in ACP Respecting Choices system for ACP
Respecting Choices Programme Started in 1993- a collaborative effort of the La Crosse, Wisconsin, healthcare organizations. Worked to develop a system in which six goals are part of routine care: 1. Adult patients are invited to understand, to reflect on, and to discuss plans for future healthcare relevant to their stage of illness; 2. Adult patients are provided competent assistance by trained nonphysicians in the planning process; 3. Written plans (however documented) are accurate, as specific as possible, and understandable to all stakeholders; 4. Written plans are stored, transferred, and retrievable wherever the patient is being treated; 5. Plans are updated and become more specific as illnesses progress; and 6. Plans are reviewed and honoured at the right time
Documentation of ACPs The Physician Orders for Life-Sustaining Treatment (POLST) program was developed to overcome the limitations of traditional practices for communicating treatment preferences. Designed for persons with progressive chronic illness or frailty. The POLST program was initially developed in Oregon, but its use has spread in the past decade to states including West Virginia and parts of Wisconsin.
POLST A mechanism to: elicit patients care preferences, translate them into a set of medical orders addressing several high probability interventions relevant to the patient s current condition, document them on a highly visible form, and ensure their portability across care settings. The POLST form expands upon CPR status orders to include orders based on preferences about a range of life-sustaining treatments.
POLST The basic POLST approach: provides actionable information on how to honor the wishes of a patient with a lifethreatening condition regarding a range of available medical treatments; documents those wishes in a physician-signed medical order on a brightly colored (typically pink) form that accompanies the patient across and between settings of care, including ambulance rides; and formalizes agreement by health professionals across all settings in the community to honor medical orders contained in the POLST form. Not just a glorified DNR order-patients may indicate their desire either for or against specific life-sustaining treatments, and may endorse different combinations of relevant treatments. According to one study in Oregon, a majority of patients requesting DNR via POLST actually wanted potentially life-prolonging interventions in at least one other treatment category. (For example, a nursing home patient s POLST might specify no rehospitalization and no cardiopulmonary resuscitation [CPR], but request antibiotics in case of infection, and tube feeding for nutrition and hydration.)
POLST form Section A: CPR orders (Resuscitate or DNR); Section B: medical interventions orders (Comfort Care Only, Limited Additional Interventions, Full Treatment); Section C: antibiotics orders (None; Limited Use, Full Treatment); Section D: medically administered nutrition or hydration orders (None, Defined Trial, Long-term Use); Section E: who the form was discussed with, summary of medical conditions/basis for the orders, and physician or nurse practitioner s dated signature.
ACP microsystem A clinical microsystem can be defined as an organized group of people who work to provide a specific service to a defined population of patients. An ACP microsystem, then, organizes a group of people to elicit, understand, document, and honour a patient s preferences about future medical care. The system is subject to continuous quality improvement
Systems approach Respecting Choices has developed the components of a systems approach that includes: 1) community engagement, 2) professional education, and 3) organization/ community standards of practice. Addressing only one of these components will leave gaps in a system and it is important to address all in order to have have a clear impact on improving care at the end of life.
Detering, K. M et al., 2010 Objective: To investigate the impact of advance care planning on end of life care in elderly patients. Design: Prospective randomised controlled trial. Setting: Single centre study in a university hospital in Melbourne, Australia. Participants: 309 legally competent medical inpatients aged 80 or more and followed for six months or until death.
Detering, K. M et al., 2010 Interventions: Participants were randomised to receive usual care or usual care plus facilitated advance care planning. Advance care planning aimed to assist patients to reflect on their goals, values, and beliefs; to consider future medical treatment preferences; to appoint a surrogate; and to document their wishes.
Main outcome measures Primary outcome- whether a patient s end of life wishes were known and respected. Other outcomes- patient and family satisfaction with hospital stay and levels of stress, anxiety, and depression in relatives of patients who died. 154/ 309 patients were randomised to ACP 125 (81%) received advance care planning, and 108 (84%) expressed wishes or appointed a surrogate, or both.
Results Of the 56 patients who died by six months, EOL 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 patients who died had significantly less: stress (intervention 5, control 15; P<0.001), anxiety (intervention 0, control 3; P=0.02), depression (intervention 0, control 5; P=0.002) Patient and family satisfaction was higher in the intervention group.
Impact of such studies Resurgence of interest in advance care planning programmes UK- ACP an essential part of the NHS National Programme on End of Life Care Australia, US, Canada...
However, not without its controversies...
Or practical concerns... Any advance care plan must be voluntary. Patients must be allowed to change their mind as their preferences are likely to evolve over a period time. There are some populations where there exist specific concerns related to ability to participate in health care decision-making. Life-limiting health conditions may have very different illness trajectories, requiring specific triggers for, and approaches to, advance care planning. Issues of equity and limits on local resources have to be acknowledged in attempting to meet patient preferences... but ACP should not be used as a method of healthcare rationing
ACP and the Irish context The Lunacy Regulation (Ireland) Act 1971- currently the chief legislation in this area Wards of Court system Mental Capacity Bill Law Reform Commission's 2005 Consultation Paper on Vulnerable Adults and the Law: Capacity In practice act in best interests, seek information on values/ preferences and involve family
Approaches to capacity Status approach Outcome approach A decision which is inconsistent with the views and values of the assessor, or rejects conventional wisdom is by definition incompetently made and this penalises individuality and demands conformity at the expense of personal autonomy. Functional approach Everyone has the right to be capricious, foolish, biased or prejudiced
Fitzpatrick v K [2008] IEHC 104 Confirmation of functional approach Distinction between competence generally, on the one hand, and the lack of capacity to make a particular decision Judgment that the Jehovah s Witness patient while generally competent, lacked capacity to refuse a blood transfusion. (Laffoy J)
Principles underpinning the Each decision is different Each patient is different Presumption of capacity Outcome irrelevant functional approach
Elements of capacity... Expressing a choice (by any means) Understanding relevant information such as risks or benefits of proposed treatments. Appreciation: ability to relate relevant information and consequences to one s own personal situation. Reasoning: ability to rationally evaluate and compare alternatives Complexity Reliability
U R Definitely Capable Understand the information Recognize the consequences of each decision Deliberate the options logically Consistently communicate his/ her final decision
All capacities are NOT equal Voluntary admission Medication (varies) Non-medication treatments Disclosure of information/ release of information Testamentary capacity Custody Marriage Contracts Money management Testify Stand trial
Cognitive abilities Complexity of decision Yes Maybe Capacity? No
Assessing for capacity Standardised capacity assessments Multiple approaches Differing thresholds Need to be sure that assessment method matches abilities tested: Problem with Mini-Mental State Examination
Best established and validated instruments MacArthur Competence Assessment Tool for Treatment Competency to Consent to Treatment Instrument Hopemont Capacity Assessment Interview Aid to Capacity Evaluation Vignette methods
The 6 Step Capacity Assessment Process (Darzins, Molloy & Strang, 2000)
Problems Agreement between expert clinicians when making capacity assessments is relatively poor. What threshold, or standard, for capacity? Emphasis on rational decision making does not reflect modern views on how people actually make
Ireland Palliative Care programme- ACP planning work project Think Ahead Other regional initiatives- Let Me Decide
Conclusions Initial efforts in the area of advance care planning met with variable success, This has led to a shift in practice, from focusing on the static act of advance directive completion to a process: that involves ongoing communication, which emphasizes an iterative process over time to discern an individual s priorities, values, and care goals and engages a proxy and others who will knowledgeably participate in the health care decision making. A variety of initiatives now focusing on achieving best practice in this manner
Conclusions Importance of including the four basic building blocks in any programme of activity- engagement, education, system infrastructure, continuous quality improvement