2.3.1 DEFINITION
Advance care planning (ACP) refers to the discussions and statements of persons’ preferences for the goals of their care in the event that they should lose capacity to communicate their wishes. ACP has emerged from wishes to have more control over ones’ last phases of life with regard to the increasing capacity of modern medicine for life-sustaining treatment (Brinkman-Stoppelenburg et al. 2014). More recent definitions of the process emphasize the importance of stating preferences more openly and they include everyday-life and spiritual preferences (Rietjens et al. 2017). Traditionally the goal of ACP has been the creation of written documents in the form of Advance directives (ADs), Do-not-resuscitate (DNR), and Do-not-hospitalize (DNH) orders (Brinkman-Stoppelenburg et al. 2014; Sudore et al. 2017).
The experience of a person engaging in ACP has been found to be less focused on AD documentation (Singer et al. 1998). Reportedly, ACP has more significance in preparing a person towards end-of-life, and key family members are often strongly involved and affected. Thus, the discussions in the process are viewed to be more meaningful than their final results (Singer et al.
1998). An individual’s preferences are not static but emerge and evolve in a series of communications between the individual and their closest people (Singer et al. 1998). Persons suffering from advanced illnesses may benefit most from care that combines life-prolonging treatment, palliation of symptoms, rehabilitation, and support for caregivers (Morrison and Meier 2004). Table 2 summarizes some of the goals of ACP.
Table 2. Various goals of ACP processes
Type of goal Description
Ethical or legal goals Own decision-making in advance for treatment choices is seen as beneficial or mandatory Goals for medical
decision-making
Medical decisions benefit from patient involvement, since medical knowledge should not override a patient’s preference
Intra- and interpersonal preparation
Preparation for death and dying is beneficial for both patient and family
Significance for society, services and costs
Decision making processes can promote beneficial and prevent futile treatments, resulting in more reasonable use of resources
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The views of older people towards ACP seem to vary. Some studies have revealed reluctance towards planning for future illness among individuals with advanced disease (High 1993; Carrese et al. 2002). On the other hand, others have noted that many older people would like to discuss EOL issues with their physician if have they have the chance (Sharp et al. 2013).
There is great variation in how legislation relates to ACP documents across different countries. In the US, the Medicare-related payer models can insist on completion of some kind of AD documentation upon admission to a LTCF.
However, in most settings no such demands exist (Hopp 2000). Living wills are legally binding in Finland, but in many countries this is not the case. In Finland, the act on patients’ rights (1992) states that patients should be heard in medical decision-making and they have the right to refuse suggested treatment. The documents traditionally related to ACP processes are outlined in Table 3.
Table 3. Documentation related to the ACP process (Rietjens et al. 2017; Sudore et al.
2017)
Document Description
Advance directive (AD) Documentation about care preferences in the event that decisional capacity is lost
Living will (LW) Mostly synonymous to AD Physician orders on
life-sustaining treatment (POLST)
A specific form to make treatment choices regarding specific medical situations, for example, DNR and DNH orders.
Durable power of attorney
A document where an individual can designate another person to make treatment or economic decisions on their behalf in the event of incapacity The results of a systematic review evaluating the overall effects of ACP promotion interventions suggest the possibility to increase the completion of ADs and the number of EOL discussions, as well as to enhance concordance between preferences and provided care (Houben et al. 2014).
2.3.2 ADVANCE CARE PLANNING IN THE LONG-TERM CARE CONTEXT
LTCF residents have particular difficulties in participating in ACP, as they are often experiencing cognitive decline or communication problems. Therefore, ACP discussions in the facilities are shifted towards collaborative decision-making between staff members and residents’ families. The process is characterized by more pronounced expert participation than in non-institutionalized ACP processes (Martin et al. 2016; Saevareid et al. 2019).
Still, increasing ACP in this setting can have positive effects on EOL care; it can reduce unnecessary hospitalization, improve compliance with end-of-life
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wishes and reduce futile but burdensome medical interventions (Brinkman-Stoppelenburg et al. 2014). Similarly, some researchers suggest that it might have other benefits such as improved communication, increased likelihood of dying in the person’s preferred place, health care savings and increasing documentation of care preferences (Jimenez et al. 2018).
Forming traditional comprehensive and highly subjective advance care plans is often not feasible at the time of admission as a result of cognitive decline (Robinson et al. 2012). Also, proxy decision-makers have understandable difficulties in making choices on behalf of their relatives in end-of-life situations, especially if they cannot rely on residents’ prior reported wishes (Fritch et al. 2013). In one study it was noted that physicians were expected to comply with preferences for care, while at the same time providing guidance. This study emphasized the need for physicians to recognize illness trajectories, and provide individualized support in decision-making processes (Fosse et al. 2014). In another it was stated that a considerable degree of disagreement on curative treatment exists between staff members and relatives of incompetent LTCF residents (Moe and Schroll 1997). This suggests a need for comprehensive communication and collaboration. It has been emphasized that discussions with proxies are aimed at bringing forth the wishes of the residents rather than their proxies (Saarto et al. 2015). Shared decision-making is a compelling model to alleviate the uncertainties all stakeholders face. Shared decision making refers to a process where residents’
matters are discussed with participation and contribution from proxies, different facility members and, if feasible, also from the residents. These discussions often involve basic information about disease trajectories, as it has been shown that caregivers’ and proxies’ understanding of dementia trajectories is associated with residents’ later quality of dying (van der Steen et al. 2013).
One widely adopted model of shared decision-making is based around
“Goals of care” discussions (Hanson et al. 2017). The goals for medical and nursing care are often presented in three general categories: 1) all possible medical interventions are used to prolong life (even if most interventions are futile for older people with advanced illness), 2) comfort is emphasized but some burdensome interventions such as hospitalization may be used if they potentially increase survival, and 3) comfort is the only goal of care, hospitalization and burdensome treatments are avoided but may still be possible if they are necessary to ameliorate suffering (treatment of acute traumas for example). Increasing shared decision-making has in some studies reduced the rate of hospitalization, while others have reported inconclusive findings (Hanson et al. 2017; Mitchell et al. 2018; Hickman et al. 2019).
Advance care planning facilitates the likelihood of advance directives and physicians’ orders, which might be generally beneficial, as even a simple physician’s order such as DNR has been noted to be associated with better quality of dying for the resident (Vandervoort et al. 2014).
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