Underlying goals of advance care planning (ACP): a qualitative analysis of the literature

‘Advance care planning is generally championed as a means by which competent patients can extend their involvement in and control of decisions regarding their own health care beyond the point at which they lose capacity as a result of illness or injury.’ [art.30] [39].

‘ACP may also provide the health care provider proof against angry, distant relatives about what the patient really wanted.’ [art. 1] [10].

‘ACP should clarify whether decisions are to be made by consensus of the family or by one person only, and the amount of leeway they have when interpreting preferences.’[art. 1] [10].

Similarly, one may argue that an advance directive should be honored because what the patient earlier said she wanted is what she truly wants now even though she is too incapacitated to know what she wants now. [art. 50] [59].

Preparing patients for such decisions shifts the focus away from premature treatment decisions based on incomplete or hypothetical information and ensures that complex health care decisions are based on a more comprehensive set of considerations, including the current clinical context, shifting and evolving goals, and patients’ and surrogates’ needs. [art. 8] [17].

‘The outcomes will, of course, often still be sad and painful, but the process will ensure that the key values relevant to the context have been adequately considered.’ [art. 9] [18].

‘ACP assists clinicians challenged by treatment cessation decisions, particularly in OP [older persons] where extended life expectancies may be associated with co-morbidities and increasing frailty.’ [art. 24] [33].

‘A “good death” contributes to organizational maintenance, while ‘bad’ deaths drain resources and create emotional distress in staff and families. ACP, therefore, may benefit not only patients with terminal illness but also the healthcare institution by systematizing and encouraging “dying well”.’ [art. 26] [35].

‘Staff felt they were now in a position to provide care that was largely based on the wishes of residents. For many this created a sense of “knowing how to care”.’ [art. 40] [49].

‘Patients recognize that they cannot anticipate all the possible circumstances of dying. However, they can direct the people who have cared for them in their lives to continue to care for them as they die.’ [art. 44] [53].

‘Patients also used the interview to acknowledge the closeness and importance of the relationship with their participating family members.’ [art. 20] [29].

‘The participants appreciated the positive impacts that ACP could have on interpersonal relationships, such as enhancing patient-family relationships, helping resolve conflicts between families and health professionals and improving trust and understanding between patients and health professionals.’ [art. 23] [32].

‘ACP facilitated the old person to continue to realise ‘the essence of their being’, to experience ‘gerotranscendence’ in end-of-life moments, and to die in a way consistent with ‘the essence of their being’, as they wished.’ [art. 21] [30].

‘One participant commented on the way in which ACP helped him to consider the manner of his death and the way in which that would affect his children. He concluded that confronting and planning for his death were important steps in helping him and his children cope.’ [art. 25] [34].

‘Most older persons in this study wanted to plan for or control the end-of-life stage, but only for those issues made important to them in their own experiences or fears.’ [art. 55] [64].

‘It is clear that attempting CPR [cardiopulmonary resuscitation] would be physiologically futile for some patients. It might also cause psychological distress to others, lead to an undignified death and deflect the cardiac arrest team away from other patients.’ [art. 13] [22].

‘A further concern may be that financial resources not be squandered in prolonging a life of very low quality. ( … ) Decisions to forgo costly treatment that has little benefit at the end of life should be easier if the patient has specifically declined it.’ [art. 2] [11].

‘Even when the purpose is not cost containment, there may be a philosophical emphasis on limiting, rather than maintaining, treatment. For example, one physician described advance planning as a method to “avoid excessive and undesired interventions in the final years of life.”’ [art. 48] [57].

‘Patients who had discussions with their physicians about end-of-life planning, received less aggressive medical care at the end of life and were transferred to hospice care earlier.’ [‘Die Patienten, die Gespräche mit ihren Ärzten über die Planung der letzten Lebensphase geführt hatten, erhielten weniger aggressive medizinische Behandlung vor dem Tod und wurden früher ins Hospiz verlegt.’] [art. 31] [40].

‘However, broad values statements, such as wanting to maintain dignity or be free from pain, are often too general to inform individual treatment decisions. Even specific treatment preferences may be difficult to extrapolate to specific clinical situations.’ [art. 8] [17].

‘Perhaps the greatest problem with the choice model is that it assumes that we can accept and choose our death long before the inevitability and reality of our dying becomes apparent. In other words, it proposes that rational and cognitive ways of knowing can subordinate our emotional, psychological, and embodied experiences.’ [art. 46] [55].

‘It is claimed by some that involvement in ACP has already come to be seen as a ‘moral imperative’. Such an understanding of ACP would make it difficult for those who do not wish to participate to resist doing so.’ [art. 9] [18].

‘“Sometimes I think it’s just to make us ourselves feel better, that we’ve ticked all the boxes, that we’ve made it very clear to the patient where things are at, so that, you know, ( … ) if the family or the patient does, I mean, deteriorate and they seem to be taken by surprise by it we can, sort of, feel like we’ve almost as if we’ve said, well, I told you so.’” [art. 26] [35].

The underlying goal of strengthening relationships has been criticized for serving the needs of family members more than patients’ needs and individual patient autonomy. Some older people fear that their children might take control too early or financially abuse their parents. Thus, if the underlying goal of ACP is strengthening relationships, one should be aware that the patient might be overlooked.

‘( … ) ACP can be beneficial for residents’ relatives, as it may ease their decision making. Whereas relatives’ wellbeing and confidence in their role as surrogate decision maker may be important outcomes of ACP, the patient’s values and preferences should be central.’ [art. 3] [12].

‘Likewise, another review of the elements of EOLC [end-of-life care] that patients ranked as being important showed that quality EOLC is not simply a matter of preference expression or control over decision-making, but a complex amalgamation of: effective communication; shared decision-making; expert care; respect and compassion; trust and confidence in clinicians; an adequate environment for care; and strategies that minimise the burden on families.’ [art. 10] [19].

‘Some patients and caregivers, including those who had completed ACP, had initially interpreted ACP to signify death and defeat, and some became “disturbed” by ACP because they believed it was being used as a mechanism “to knock patients off.”’ [art. 29] [38].

‘Pressure to transform clinicians from knowledgeable advisors to advocates for the limitation of care threatens to undermine the ethical validity of advance planning.’ [art. 48] [57].

‘If a right to die becomes a duty to die, the living will and its progeny, the natural death act declaration, will have become a Frankenstein monster.’ [art. 49] [58].