A. Preferences, well-informed choices and needs

2010 begins (in its introduction, henceforth Intro) by noting that people have varying views on how best to deal with death and dying.ⁱⁱ This is the fundamental reason it gives for emphasising ‘patient-centred’ care; that is, care ‘anchored in the patient's own values and preferences’ and goals (Intro).ⁱⁱⁱ Another fundamental concern of 2010 is that patients ‘be supported in making well-informed choices among the full range of options for their care—whether aggressively life-prolonging, or entirely comfort-based or some balance of the two’ (Intro). It says ‘For some people, end-of-life care will include the use of advanced medical technology that attempts to extend life even if the burdens of treatments increase and the odds of success diminish. Others…prioritize comfort…many will choose aspects of both, varying over the course of their illness’ (p. 2). It claims that well-informed patient-centred care would ‘improve end of life care’ (p. 2) and ‘enable individuals to retain as much control as possible over their end of life experience…a good death according to their own definition’ (p. 29).^iv 2010 seems to emphasise cognitive awareness of prognosis and options as playing an important role in this improvement.

What prompts the report is concern that patients as of 2010 were not getting such a ‘patient-centred’ end of life (EOL) experience. 2010 notes that 70% of Americans say that they want to die at home yet 70% die in hospital (pp. 1–2).^v However, 2010 goes on to interpret this expressed desire to die at home, ‘When people say they “want to die at home”, almost all have more in mind than the physical location of their last breath’ (p. 2). Hence, in going on to describe what it believes people actually want and what the report is concerned that they are not getting, 2010 says (in part), ‘Regardless of their care setting, what people want and need at the end of life…that their wishes and values are respected, that their symptoms are well controlled, that their dignity is maintained, and that they can spend as much meaningful time as possible with those they most love’ (p. 2). It also says ‘Some…undergo more intensive medical interventions than they want, some less…Too often there is a mismatch between what they want and what they get’ (p. 3). Notice that the idea of a mismatch is neutral as to the content of their preferences; it does not refer to specifics such as symptom control and meaningful time with loved ones as the earlier quote does.

B. Possible conflicts among preferences, objectives goods and well-informed consent

The 2010 paragraph quoted above shows, I believe, that 2010 is concerned with more than what patients want. First, the paragraph is also concerned with what patients need. One could need something one does not want and one could want something that one does not need. Furthermore, needs are usually thought of as being determined on more objective grounds (or are intersubjectively agreed to be reasonable), unlike wants and preferences, which need not be reasonable.^vi 2010 might be concerned with the overlap of wants and needs but this is not clear.

Second, the quoted paragraph seems to list control of symptoms, maintenance of dignity and spending meaningful time with loved ones both as the objects of people's preferences and as goods separate from and in addition to satisfying people's preferences. If they are considered goods independent of being preferred by patients, achieving them may be an additional standard to be met in determining whether EOLC and quality of EOL is good. These factors all have to do with the patient's well-being or status but they are outside of ‘patient centeredness’, which (as used in 2010) does not refer to concern with patients' well-being or status in general but to being ‘anchored in the patient's own values and preferences’ (Intro).

Third, there are other grounds for thinking that in addition to satisfying patients’ preferences, 2010 is concerned with more objective measures of improving EOLC and experience. For example, it says well-informed consent requires that ‘evidence-based best practices’ (p. 19) be among the options from which patients choose. Also, ‘Because palliation provides proven benefit (by measure of longer life, better time alive, etc.) [it] should be included as an option’ (p. 4). It goes on to say that given these proven benefits, a choice ‘cannot be considered well-informed…unless [patients] have…understanding, as early…as possible’ (p. 4) of palliative care as an option, and for ‘choices to be well informed…[patients] must understand what hospice offers’ (p. 5).^vii There is also mention that these options include spiritual support (eg, see Executive Summary).

It seems then that for EOLC to improve by being driven by patients' own choices, the choices must be well informed. This means that there is certain information with respect to best practices that patients ‘must’ have (p. 4) whether they want the information or not. This is not an unreasonable view but it would be good for it to be made clear since it goes beyond doing what patients prefer, which might be interpreted to imply following their preferences about whether to receive full information. (The latter position is taken in 2015 and in TCP, as we shall see.) Indeed, 2010 goes so far as to say that ‘payment for medical services requires adequate documentation that they are based on the well-informed wishes of patients (or appropriate surrogates) including understanding of life-prolonging and palliative care or hospice alternatives’ (p. 23). Hence, 2010 touches on an important and disputed philosophical issue about whether well-informed consent is an option that patients have a right to exercise or more like a duty that patients must perform.

Despite its emphasis on full information about options, 2010 never mentions physician-assisted suicide (PAS), available in some areas of the USA and foreign countries, as something about which patients should be informed. Though PAS is not offered in Massachusetts, it remains an option as some patients move residence to acquire PAS.^viii I shall return to this issue below.

C. Possible conflicts between preferences and ‘best practice’ standards

Conflicts might also be generated between 2010's (1) commitment to some choosing ‘medical technology that attempts to extend life even if the burdens of treatment increase and the odds of success diminish’ (p. 2) along with its insistence that ‘[n]o patient is forced to decline life-prolonging measures in order to receive palliative care services that enhance quality of life’ (p. 23) and (2) its claim that ‘[f]rom time of diagnosis…the central responsibility of health providers…is to help ensure that patients and their loved ones make the most of whatever amount of time it is possible for them to have together’ (pp. 11–12). Point (2) suggests that the focus is on quality of life and that may conflict with increasing burdens of treatments allowed in point (1). 2010 describes a palliative care physician saying to patients that ‘Your oncology team is in charge of helping you live as long as possible. I am in charge of helping you live as well as possible. And we are working together’ (p. 12). However, living ‘as long as possible’ may be inconsistent with living ‘as well as possible’ and more likely there will be compromises with one or both goals. 2010's claim that ‘if an acceptable quality of life can be achieved, most patents will then of course want longer life in that condition’ (p. 12) seems to recognise that ‘acceptable quality’ need not be ‘as well as possible’.

Most importantly, the standard of ‘evidence-based best practices’ that is used as grounds for including palliative and hospice care as options might not endorse the report's permission to pursue life-extending treatments that have ‘marginal or no benefit’ (p. 4) as ‘the odds of success diminish’ (p. 2). 2010 refers to a report that says about EOL medical treatments: ‘the extra care does not produce better outcomes overall or result in better quality of care’ (p. 14). So, it seems that 2010 does not require possibly life-extending medical treatments at EOL to meet a best practices standard it requires of palliation and hospice. On one hand, this exhibits willingness to allow people to go on resisting death and unwillingness to deny payment for such treatments while, on the other hand, it raises the question of why a standard of provable benefit used to judge the inclusion of some options should not be used to judge them all.

D. Possible conflicts between patient's preference/needs and family preference/needs

The measures of improved care in 2010 that we have considered so far all focus on the patient—what is thought to be best for the patient or respectful of the patient's preferences (even if conflict is possible between these measures). However, an additional measure of improved experience of death and dying in 2010 emphasises effects on family members (pp. 3, 5). It speaks of seeking ‘lasting positive memories for family members after their loved ones have died’ (p. 7) independently of whether patients have this as one of their preferences. Indeed, a diagram providing a new model of planning care lists bereavement support for the family after the patient's death (p. 13). This is another way in which it is suggested that EOL experience can be improved independent of merely following patients' preferences. Hence, the way is open for possible conflict between patients' preferences and their family's comfort.^ix

It is already well known that despite a person's having signed an organ donor card, doctors have often gone to family members to ask permission to take organs and desisted when they refused. It is not clear why family members should have such control and a recommendation like 2010's to attend to the comfort of family members after their relative has died should not support such practices. Indeed, it should be possible for someone to place legal restrictions on family members overriding his wishes. There is a problem with this, however. In suggesting topics for a conversation with relatives, TCP asks: ‘Are there any disagreements or family tensions that you are concerned about?’ (p. 4) and C-TAC notes that increasingly family members are involved in providing EOLC (p. 4). While it is expected that conversations will smooth disagreements, there is a possibility that relatives will abandon a patient who insists on enforcing his preferences at odds with their own, once they find out his preferences in a TCP-recommended conversation.

So far, we can see that given what 2010 recommends, there are at least three standards for improvement in EOLC and experience: (a) satisfying patients’ preferences; (b) satisfying such objective values as well-informed consent, less pain and suffering, exposure to best practices etc and (c) family positive reactions. There is a possibility of conflict among them that 2010 does not seem to recognise.

E. Possible conflicts among cost-effective choices, distributive justice and beneficence

Is there another possible standard for judging EOLC (which could lead to further possible conflict among standards)? 2010 emphasises that its proposals are not motivated by a desire to cut medical costs even though palliative and hospice care may cost less. However, it may seem that ensuring that patients are well informed about more cost-effective EOLC options (ie, ones producing greater benefits at lower cost) may lead to patient choices producing results that other countries try to achieve by public rationing (such as National Institute for Health and Care Excellence in the UK) to which there is often public resistance. However, rationing can often sacrifice benefits to those whose costs are cut. By contrast, 2010 claims that alternatives such as palliation and hospice can actually increase benefits to those whose costs are cut (eg, improve the quality of life and length of life). So there is said to be no conflict between reducing costs and increasing benefits.

Nevertheless, C-TAC emphasises that in its view when it comes to finances, changing AC and EOLC is a ‘population-based approach to care and coverage’ (p. 24) involving ‘population-based or value-based payments’ (p. 25) and ‘outcomes and successes are measured and valued at a population level rather than just service encounters between individual clinicians and patients’ (p. 9). The sense of ‘value’ in play here is important. For example, prominent palliative care proponent Dr Diane Meier (in a lecture at Mt. Sinai Medical School, 21 July 2016) used the formula Value=Quality/Cost (which she said now rules US government healthcare programmes) to evaluate the worth of palliative care. This is a cost effectiveness measure, but according to Meier, one could also directly read off of it ethical improvement: increasing quality represents increasing beneficence and decreasing costs represents more distributive justice (because money is not concentrated in one group where it does little good but is available for better use by others). However, it is not true that providing improved outcomes at lower cost is automatically a sign of more distributive justice or increased beneficence. This is because who gets the cost-effective outcomes is crucial for distributive justice and how much moral value an outcome has is crucial for beneficence.

According to many moral philosophers, known as prioritarians, there is greater moral value and increased distributive justice in giving at least some priority to helping those who would be among the worst off without help.^x On this view, there could be greater moral value and more distributive justice achieved in giving even a smaller benefit at greater cost to those who would be worse off without help than in giving a greater benefit at less cost to those who would be better off even without help. For example, home palliative care might produce more improvement at less cost if (1) given to the rich and educated who also have a relative caretaker than if (2) given to the poor who have little education and are living alone. Yet distributive justice and beneficence might be better served in (2) than (1). Seeking the biggest improvement at the lowest cost may be a mark of value interpreted as efficiency but it is not necessarily a measure of value interpreted as beneficence or distributive justice. It would be unfortunate if this major point in moral philosophy were ignored by those involved in AC and EOLC projects.^xi

F. Conversation versus written documents and advance versus current preferences

The ultimate recommendations of 2010 are that there be AC planning consisting of more than a living will and involving meaningful conversations with patients: ‘physicians…helping them understand their prognosis, explore options and evaluate the risks and burdens of their choices’ (p. 19) and to ‘reliably elicit patients’ wishes’ (Executive Summary). C-TAC emphasises helping patients clarify their own values and goals through reflection over time (p. 21), often revealing preferences they were unaware of before. 2010's listed goal to ‘elicit patients’ wishes’ suggests others becoming aware of wishes the patient already knows he or she has, by contrast to TCP's suggestion that a patient may for the first time come to know his own preferences through reflection. A process that does the latter may actually bring people to have new preferences^xii and one should be sure they are authentic and not instilled by others through a suggestive process. In addition, 2010 and C-TAC emphasise that the results of conversations and medical orders for life-sustaining treatment should be recorded, retrieved and respected by all caretakers. Conversations and recording of results are to be initiated earlier rather than later because patients may die much sooner than their own doctors predict (p. 12) and because of the benefits to be achieved by earlier commencement of palliation or hospice (if chosen).

While 2010, C-TAC and TCP all emphasise conversation with loved ones and professional caretakers, TCP seems to place less emphasis than the other two on creating a permanent and retrievable record of these conversations. This may be a crucial omission for though the project's title refers to ‘the’ conversation, TCP specifically says ‘…having the conversation isn't just a one-time thing. It's the first in a series of conversations over time’ (TCP, p. 3). More than one conversation may be required with different people to clarify or change what was said first, to deal with questions that cannot be dealt with in one session. Though there is mention of someone being concerned about how he or she was interpreted and what people will remember of what he or she has said (p. 11), no mention at all is made of recording the conversations so that there is a permanent record.

In general, one might wonder why person-to-person conversations rather than only a written record of one's preferences are necessary with those who are not to be designated proxy decision makers. Perhaps conversation is emphasised because written prescriptions require too precise directives to be useful in changing circumstances whereas conversation allows communication of underlying values from which others can extrapolate decisions.^xiii However, a written record of underlying values is also possible independent of a conversation and decisions could be extrapolated from it. It is possible that back and forth conversation could lead to useful examination of one's preferences and presentation of more information bearing on them, perhaps leading them to change. Perhaps conversation is emphasised because ‘90% of people say that talking with loved ones about EOLC is important [though only] 27% have actually done so’ (p. 2). However, these people may be wrong to think it is more important to speak to loved ones than to (a) write down either what one prefers or one's underlying values and to (b) make it legally impossible for loved ones to act contrary to these unless one wants them to have this option. However, without a legal restriction on loved ones' actions, an additional reason for having conversations appears: finding out if there will be opposition to one's wishes or underlying values and convincing loved ones not to override these.

2010, TCP and C-TAC all emphasise that conversations should begin well in advance of a decision time so that people have time to reflect and discuss issues. But this should not be interpreted to mean that past preferences take precedence over a competent patient's current ones just because the former were the result of longer reflection and more conversation. So it is worth emphasising that if a patient is still competent at the time decisions must be made, his or her current wishes should take precedence over any past written or discussed ones.^xiv At the time a decision must be made, even patients whose wishes are clearly inconsistent with their past wishes and past (and even present) deepest values typically have their current wishes honoured out of respect for their personal sovereignty. The most famous cases of this sort involve Christian Scientists who request life-saving medical procedures contrary to their past instructions and deepest values.

A. The Conversation Project

TCP's questions are intended for anyone, not only patients, to help prepare for and then actually have a conversation with someone else whom one either wants to (1) know one's preferences for one's EOL or (2) encourage to tell their preferences. As such, it is a population-wide effort not limited to clinical relationships. I will briefly examine some of TCP's preparatory questions and prompts and some actual conversation suggestions.

B. The Serious Illness guides

2015 can be seen as another attempt to carry out recommendations like 2010's to engage in meaningful conversations to ‘reliably elicit patients’ wishes’ based on information about prognosis and options for further care.^xvii The study constructed and used (1) a Serious Illness Conversation Guide (henceforth SICG) for use between doctors and patients with a family member or other support person (see figure 1 in 2015) and (2) a preconversation list of questions (henceforth Pre) that patients should consider before the conversation (see figure 5 in 2015). The questions in Pre do not correspond exactly to those in SICG though they do bear on them. (It would be good to know why patients are not asked to reflect on the SICG's actual questions.) 2015's SICG is identical with the SICG developed by Ariadne Labs (dated 22 May 2015).7 Ariadne Labs is a project with which Dr Atul Gawande, one of the coauthors of 2015 (and the author of Being Mortal, Henry Holt & Co. 2014) is affiliated. Let us now consider the study in more detail.

A. EOLC and emotional versus mere cognitive acceptance

2015's discussion of peacefulness makes reference to PEACE, a study of different responses to knowledge of impending death that can help us to better understand some professionals' conception of a good death. PEACE begins by distinguishing between mere cognitive awareness of one's prognosis, the sort of understanding of information that 2010 emphasises, and emotional response to that information. It claims that one possible emotional response is an ‘existential crisis’ as ‘patients review their lives in light of illness and impending death’ (p. 2510). It distinguishes two particular types of responses (called ‘adjustments’, p. 2515): (1) One type, called ‘peaceful acceptance’ (Acceptance), is described in the words of Erik Erikson as involving ‘confronting one's own mortality--with integrity…an informed and detached concern with life itself in the face of death…finding meaning at the end of life (EOL)…maintain their sense of dignity’ (p. 2510); it is seen as the ‘final stage of human development (typically occurring in late adulthood)’ (p. 2510). (2) The second type of adjustment, called Struggle, involves ‘despair, fear, and foreboding, injustice, anger…and the sense of a foreshortened future’ (p. 2510) and is more frequent in younger patients (p. 2515).

The purpose of the study was to see the relation between Acceptance or Struggle and EOLC outcomes, in particular the relation to ‘location of death and use of invasive measures at the EOL’ (p. 2510). However, the authors also say, ‘This construct [Acceptance/Struggle]…may be an important target for clinical interventions aimed at improved well being at the EOL’ (p. 2515). This might imply that Acceptance or Struggle in itself is a component of well (or ill) being independent of its effects. This would represent a view about the intrinsic value of these adjustments. Alternatively, it may merely involve judging the value of the effects of Acceptance or Struggle (eg, certain locations of death and use of non-invasive means) as in themselves components of well-being at the EOL with Acceptance or Struggle having only instrumental value or disvalue.

B. The contents of Acceptance and Struggle as the study describes them.

C. Problems of aiming at peaceful acceptance, non-invasive means and spirituality

Now given PEACE's conception of Acceptance, consider its ultimate conclusions: To improve well-being (an intrinsic good) in EOL one should seek (peaceful) Acceptance in patients. A prominent effect of Acceptance, the study says, is less use of invasive measures (eg, feeding tubes) in EOL, while there is increased use of invasive measures with Struggle (p. 2515). One interpretation of this is that not using (even minimally) invasive means is itself considered a component of well-being and an improvement in EOLC. But why is this true if the invasive means are life sustaining and not major impositions on other activities?

With respect to caregiver action, PEACE says, ‘If acceptance and struggle…change over time, then they also may be targets for interventions to improve EOL care…This construct [Acceptance/Struggle]…may be an important target for clinical interventions aimed at improving well being at the EOL’ (p. 2515). A prominent cause of Acceptance, it is reported, is a patient's sense of being ‘highly spiritual’ (p. 2515), though no details are given about what this spirituality involves. With respect to caregiver action this could imply that ‘interventions’ should be aimed at making people more spiritual because this would lead to Acceptance which would lead to reduced use of invasive means and hence, according to the study, a better EOL.

It seems that adding ‘peacefulness’ as an independent factor worth achieving either intrinsically or instrumentally might lead some who begin with the aim of satisfying patients’ preferences (because there are varying opinions about good EOL (2010)) to adopt different aims. In particular, the aim of encouraging a particular world view or way of approaching reality (high spirituality) as a means to further a particular view of a good EOL and good EOLC (eg, peacefully and with no invasive means such as feeding tubes). I think such a change in aims is a matter for concern.

If evidence showed that mere knowledge of one's prognosis and options led to patients choosing the professionals' preferred EOL, patient knowledge and choice would be vindicated as a means to what professionals view as the best EOL (though they would not necessarily be valued for their own sakes). However, according to PEACE, mere cognitive awareness does not always lead to choosing its favoured EOL experience because Struggle can occur in response to knowledge. (Note that Acceptance (as PEACE understands it) and only non-invasive care are even less likely if patients are allowed to reduce the information they are given as in SICG (2015 and 2016) and so do not know how bad things are.) Some might see this as an argument for not providing information about invasive options or for society refusing to fund EOL invasive procedures. Rather than recommending such action, PEACE seems to suggest doing what will bring about the particular emotional adjustment (Acceptance) that will lead patients to choose its favoured EOLC. The problem is that this may require encouraging ‘spiritual awakening’ and such encouragement does not seem respectful of persons with different views.

D. Assisted suicide and acceptable life to the end

Finally, PEACE's discussion of Acceptance of, and Struggle with, illness and death is not supplemented by discussion of Seeking death (as in PAS). PEACE says: ‘patients with higher symptom burdens…poorer functional status also had higher Struggle With Illness scores’ (2515). This seems a reasonable patient response but one would have thought that in the absence of ability to lower symptom burdens and improve functional status, such patients might also want to be helped to seek death.

This brings us back to the declared aim of projects reported on in 2010, C-TAC and TCP, which is to make life up to death acceptable to the person living it. One participant in a Petrie-Flom/C-TAC conference spoke about having a last phase of life leading to death that would be like jumping off Niagara Falls, implying that she wanted to avoid a long period of decline or of being at a low point.11 However, this may not always be possible even if one avoids life prolonging treatment and uses effective palliative care. For according to the projects I have discussed, a person is to determine what an acceptable EOL is for him or her and this may involve much more than simply avoiding physical suffering (eg, meaningful projects).^xxiii Persons not using life-support therapy cannot escape an unacceptable life so understood by being disconnected from life support (considered a form of letting die rather than killing).^xxiv Hence, a person's life may not end before it becomes unacceptable to him or her unless someone actually causes his or her death.

One may argue that inducing death differs from ending life support because only if life support is not ended will there be an imposition on someone's body contrary to his or her wishes. It is debateable whether this is a difference that morally rules out inducing death.^xxv My concern now is only that those who support the aims of 2010, TCP and C-TAC (i) do not oppose people ending life-saving treatment with the intention of avoiding what is a personally unacceptable life though it does not involve irremediable physical suffering,^xxvi (ii) they also want active interventions that will make life not unacceptable to the person whose life it is and (iii) there are those, such as Atul Gawande (a coauthor of 2015), who favour active intervention with PAS to end irremediable physical suffering,12 implying the view that intentionally inducing death is not always a moral barrier to ending life. Holding these three views suggests that one should also favour allowing PAS so that someone can avoid an EOL he or she finds unacceptable even if it does not involve irremediable physical suffering.^{xxvii, xxviii}