THE ROLE OF PATIENT NARRATIVE IN BEST INTERESTS DECISION-MAKING
Patient Narrative in healthcare decision making
The process of healthcare decision-making has important consequences, not just for patients
but for those who love and care for them. Respect for patient autonomy is at the core of
healthcare decision-making and the concepts of ‘patient centred care’ and ‘shared decisionmaking’ resulting in increased patient involvement in treatment decisions have been
associated with improved health outcomes.1 Patient narrative is recognised as underpinning
the dialogue between the doctor and patient to facilitate informed decision-making which is
consonant with the patient’s story. It provides “meaning, context and perspective for the
patient’s predicament”.2 A narrative approach considers the unfolding of a person’s life
according to the values and beliefs which make him who he is – the story of his life.
Kuczewski considers that when an adult is unable to make healthcare decisions due to lack of
capacity, the patient’s story,
has a prima facie moral claim to being finished in a way consistent with what has
come before and with the values and self-conception with which the person has tried
to shape it. The surviving interests of a person are interests in seeing the story carried
out in a way that is meaningfully related to how it has proceeded up to the loss of
decision-making capacity.3
Of course there will be multiple narratives in the decision making process; family, carers,
clinicians and perhaps the judiciary and each will bring their own perspectives and values.
The weight given to these narratives depends on the authority of decision-maker, the
R. Say and R. Thomson ‘The importance of patient preferences in treatment decisions: challenges for doctors’
(2003) BMJ 327: 542-545
2
T. Greenhalgh and B. Hurwitz ‘Why Study narrative?’ (1999) BMJ 318, 48 -50 at page 48
3
M. Kuczewski ‘Commentary: Narrative Views of personal identity and Substituted Judgment in Surrogate
Decision Making’ (1999) Journal of Law, Medicine &Ethics 27 (1):32- 36,33
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authenticity and perceived accuracy of his views and how far they move away from
promoting the basic interests of the patient, such as dignity, freedom from pain and suffering,
and life itself. At the heart of the decision-making process is the patient who lacks the
capacity to make the decision. Thus, to give effect to the culmination of his ‘story’, sufficient
weight should be attached to his narrative. Blustein considers that decisions should be made
in accordance with the patient’s narrative because this is what it means to treat him as a
person,4 thus affirming the value of autonomy.
Best interests test for those who lack capacity to make healthcare decisions
The best interests’ standard for decision-making on behalf of adults who lack capacity
established at common law recognises the importance of both the medical and wider holistic
factors. In Re A (Medical Treatment: Male Sterilisation) the Court of Appeal identified that
best interests encompasses “medical, emotional and all other welfare issues.”5 The statutory
provisions set out in the Mental Capacity Act 2005 (MCA) build upon common law. The
MCA does not define ‘best interests’ but sets out a checklist of factors which the decisionmaker must take into account, including the patient’s past and present wishes and feelings,
the beliefs and values that would be likely to influence his decision if he had capacity, and
other factors that he would be likely to consider if he were able to do so (s4 (6) MCA). The
MCA best interests checklist thus “involves an element of substituted judgment being taken
into account”6 because it requires the decision-maker to consider the patient’s hypothetical
choice. However, despite this subjective element, the best interests test is an objective test,
balancing the overall benefits and burdens of the proposed treatment options. Tonelli states
that “an objective standard, usually represented by best interests standard differs from
J. Blustein “Choosing for others as Continuing a Life Story: The problem of personal Identity Revisited”
(1999) Journal of Law, Medicine and Ethics 27: 20 -31, 28
5
Re A (Medical Treatment: Male Sterilisation) [2000] 1 F.L.R. 549 page 5 per Butler-Sloss L.J.
6
In the Matter of G (TJ) [2010] EWHC 3005 (COP) para 55 per Morgan J.
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substituted judgement in that decisions will be independent of the personal desires of the
patient and therefore, generalizable across a group of patients in similar circumstances”.7 This
‘theoretical tension’8 can be reconciled through recognition that patient well- being is shaped
by the personal standards of the patient about acceptable living circumstances, and best
interests are equated with patient well-being. But this account requires sufficient
consideration of the patient’s narrative – his values, wishes and perception of wellbeing. If
the patient’s narrative is marginalised, or at worse ignored, the focus of best interests shifts to
the medical harms and benefits and renders respect for patient autonomy nugatory. This
dilemma was illustrated in the High Court decision of W v. M.
W v. M
Aged 43, M (the patient), experienced a sudden collapse as a result of viral encephalitis
which left her with extensive and irreparable brain damage. She has since been totally
dependent on others for care and has been fed artificially through a gastrostomy tube. She is
in a minimally conscious state (MCS), thus aware of herself and her environment but not
fully conscious. Medical evidence shows that she experiences regular pain, discomfort and
distress (about 30% of the time). She is totally dependent on others for care and is immobile,
doubly incontinent and is moved by a hoist. There is no realistic prospect of recovery. Clearly
M lacks capacity to make decisions about her treatment. Her sister in giving evidence in the
High Court hearing contrasted M’s previous life with her current circumstances – “it’s not a
life, it’s an existence and I know she wouldn’t want it”.9 To them M is a different person in
comparison to her previous independent existence.
M. Tonelli ‘Substituted Judgment in Medical Practice: Evidentiary Standards on a Sliding Scale,’ (1997)
Journal of Law, Medicine & Ethics 25:22–29, 23
8
N. Cantor, Conroy, Best Interest, and the Handling of Dying Patients, (1985) Rutgers L. Rev. 37:543 – 577,
564
9
W v. M (2011) EWHC 2443 (Fam) at para 112
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The perspectives of the different stakeholders in the decision making process, the patient as
expressed by her family, clinicians and carers were considered at length by the court. Of
course the judiciary has a role in interpreting and giving weight to these narratives. As Holm
notes, “many of the disputes under the MCA are likely to be between persons and their health
care team and many of these are not going to turn on differing interpretations of medical
facts, or resolvable vagueness in moral or ethical values. The dispute will simply be about
what set of values that should prevail in a particular case, the patient’s or the health care
team’s.”10 If the different narratives promote conflicting values, which are prioritised –
preservation of life or the patient’s values and wishes expressed at an earlier time?
M’s narrative articulated by her family
An evaluation of the patient’s best interests requires consideration of medical, emotional and
all other welfare issues. Such considerations “go well beyond the expertise of a single
doctor”11 and those close to the patient, his family and carers, may provide valuable insight in
the assessment of the more holistic, non-medical aspects of best interests. Indeed the MCA
requires the decision-maker, where practicable and appropriate, to consult anyone engaged in
caring for the patient or interested in his welfare and to take into account their views as to
what would be in the person's best interests (s4(7)).
In W v. M12 M’s family considered that M would not want to continue her burdensome life
with such a lack of dignity. It was their view that withdrawal of artificial nutrition and
hydration (ANH) was in her best interests. On witnessing the decline of her grandmother in a
nursing home M had said on more than one occasion words to the effect that she would not
10
S. HØlm, Best Interests: What Problems in Family Law Should Health Care Law Avoid? (2008) Health Care
Anal 16:252–254, 254
11
Mentally Incapacitated Adults and Decision-Making: Medical Treatment and Research, Consultation Paper
No. 129 (H.M.S.O. 1993) para 3.59
12
[2011] EWHC 2443 (Fam)
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wish to live like that, that she would not wish to be dependent on others, and that she “wanted
to go quickly”13. The court also heard from M’s sister that, when reports about Tony Bland
appeared on television, M expressed views to the effect that it would be better to allow him to
die.
The court accepted the veracity of the evidence of M’s sister and partner but did it have
sufficient probative value? In the US, where substitute decision-making is the basis for the
decision-making for incompetent patients, the courts have articulated the need for ‘clear and
convincing’ evidence as to what the patient would have wanted to justify withdrawal of life
sustaining treatment.14 However, studies of surrogate decision-making demonstrate a lack
consistency and accuracy between the choices made by the surrogate and those of their loved
ones. A study by Vig et al has shown that surrogates describe five bases for decision-making:
conversations; documents; shared experiences, the surrogates own values and a network of
contacts such as religious leader. “Approximately 2/3rds of the surrogates planned to make
future decisions based on knowledge of their loved ones’ care preferences that they had
gained from conversations”.15 Thus, it may be very difficult for family members to provide
‘clear and convincing’ evidence that the patient would have wanted a certain outcome in a
particular situation (substituted judgment). They can nevertheless provide insight into which
treatment options seem to fit best with the patient’s wishes, beliefs and feelings. According to
Ho, the input of laypeople relies on “various intuitions or visceral reaction rather than appeal
to well-reasoned arguments”.16 In W v. M, M’s sister said that “I know that’s what she wanted
13
W v. M (2011) EWHC 2443 (Fam) para 230
Re Martin 538 NW 2d 399 (1995 Mich Sup Ct)
15
E. Vig et al, ‘Beyond Substituted Judgment: How Surrogates Navigate End of Life Decision-Making’ ( 2006)
JAGS 54: 1688 – 1693, 1691
16
A. Ho ‘“They just don’t get it!’’ When family disagrees with expert opinion’ (2009) J Med Ethics 35:497–501
at page 498
14
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in her heart of hearts”17 and M’s partner said “I think she would be horrified that she was
carrying on in this undignified manner”.18 He said that knowing her views and opinions they
were M’s ‘voice’. In the process of best interests decision-making the family input the
patient’s ‘views and beliefs’ in contrast to medical ‘knowledge’ and ‘decisions’. One way of
appreciating the role of the family is that they provide input on “how well a particular
decision hangs together with elements of the formerly competent patient’s identityconstituting narrative”.19
Carers’ narrative
In W v. M the court heard evidence from a number of professional care staff at the residential
nursing home where M was cared for. They portrayed her life in much more positive terms
than by members of her family. They described situations when M seemed happy or
distressed and her responses to particular experiences; M’s eyes clearly moving and tracking,
noises she made, M crying in response to records played and how M became tense and pulled
her arms up under her chin when her wheelchair was being pushed across a rough path.
In contrast to the evidence given by M’s sister and partner about the value M had attached to
her independence before her collapse the professional carers’ input describes M’s current
behaviours - akin to what Dworkin describes as experiential interests - what gives her
pleasure. Dworkin considers that our perception of what makes a ‘good life’ involves critical
and experiential interests. It is a person’s critical interests such as commitments, relationships
and work, which are central to a meaningful life. The evidence of M’s family focusses on her
critical interests, what makes M who she is. Dworkin argues that critical interests survive
17
[2011] EWHC 2443 (Fam) para 112
Ibid. para 119
19
J. Blustein “Choosing for others as Continuing a Life Story: The problem of personal Identity Revisited”
(1999) Journal of Law, Medicine and Ethics 27: 20 -31at 23
18
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incompetence and therefore should take precedence over a person’s experiential interests –
experiences that give rise to a pleasurable life.20
Clinical Narrative
The person responsible for making the determination about best interests, usually the
clinician with care of the patient, will bring medical expertise in assessing the patient’s best
interests. As Ho puts it,
Physicians are experts with a superior ability to accurately diagnose patients and come
up with a range of possible solutions for various clinical problems, such that they are
in a better position than their lay patients to decide what medical options would be in
the patients’ best interests.21
They can draw upon statistical data and their previous experience to predict the probability of
outcomes. Thus the medical perspective of best interests could be seen to provide an
‘objective’ perspective based on knowledge and facts and is seen as dependable and evidence
based.
Even so, the clinical experts in the W v. M case had different views about the value of M’s
life. Dr Badwan, a clinician in rehabilitation medicine instructed by the Official Solicitor,
assessed Ms’ quality of life as ‘reasonable.’ He took the view that “ANH should never be
withdrawn from a patient in MCS”.22 In contrast, Professor Turner- Stokes said she was
“unable to identify any aspect of her [M’s] life that gives her positive pleasure or
R Dworkin Life’s Dominion: An Argument About Abortion and Euthanasia, 1993 Harper Collins, London
A. Ho’ “They just don’t get it!’’ When family disagrees with expert opinion’ (2009) J Med Ethics 35:497–501
at page 497
22
[2011] EWHC 2443 (Fam) para 198
20
21
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satisfaction”.23 She thought that because M’s negative experiences outweighed the positive
ones it would be appropriate to withdraw ANH and allow her to die in dignity.
Of course the contribution of both the medical and wider welfare perspectives is essential to
evaluate the best treatment option for the incompetent patient and indeed the involvement of
family members may corroborate the proposed treatment as the ‘best’ option. But difficulties
arise where there is a difference perception about the patient’s best interests. All stakeholders
in the best interests’ decision making process will bring their own values in evaluating the
patient’s best interests.
Savulsecu acknowledges that “medicine as a practice is founded on commitment to certain
values: pain is bad, longer life is usually better than shorter life, and so on. A part of learning
to practise medicine is learning to take on these values”.24 Best interests will always have a
normative imperative. As Dresser remarks,
It is conceptually impossible to keep the best interests evaluation completely focussed
on the individual patient. The only way to decide what is best for the patient is by
reference to broader definitions of what is good and bad for human beings.25
The medical values of prolongation of life, avoidance of pain etc. can be perceived as
objectively good. Tonelli takes the view that when families communicate decisions to the
23
Ibid. para 199
J. Savulescu ‘Rational non-interventional paternalism: why doctors ought to make judgments of what is best
for their patients’ (1995) Journal of Medical Ethics, 21: 327-331, 329
25
R. Dresser, ‘Missing Persons: Legal Perceptions of Incompetent Patient’ (1994) Rutgers L Rev 46 (2) 636-47
at page 662
24
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doctor he starts not with basis of evaluating the evidence to support it but with a comparison
to the objective best interests of the patient.26
Which narrative is prioritised?
Munby J. has stated that “the statute lays down no hierarchy as between the various factors
which have to be borne in mind, beyond the overarching principle that what is determinative
is the judicial evaluation of what is in P's “best interests”.27 Nevertheless, Ho considers that
“clinicians’ ‘expert’ opinions are consistently considered superior”28 to the family’s beliefs
regarding their loved one’s wishes or interests. Her proposal to equalise the ranking of the
different perspectives, is a commitment to ‘epistemic humility.’ This involves,
the recognition of the boundary of one’s expert domain as well as appreciation of the
limitation of one’s knowledge in making appropriate decisions. It acknowledges the
importance of considering diverse perspectives, including non-clinical ones held by
the families.29
Counsel for M acknowledged that although it was not known exactly what M would have
thought of her actual condition, M’s views should be given substantial weight. Baker J.
recognised that many people would find the quality of life of MCS “impossible to accept
were they able to consistently express themselves with full competence”.30 However, he
thought it would be wrong to attach significant weight to the statements made by M before
her collapse because there was no possibility of knowing how she now feels about her current
life. Surely it is precisely because it is not known how M feels about her current life, that
M. Tonelli ‘Substituted Judgment in Medical Practice: Evidentiary Standards on a Sliding Scale,’ (1997)
Journal of Law, Medicine & Ethics 25:22–29
27
Re M (Statutory Will) [2009] EWHC 2525 (Fam) para 32 per Munby J
28
A. Ho ‘“They just don’t get it!’’ When family disagrees with expert opinion’ (2009) J Med Ethics 35:497–501
at page 4998
29
Ibid. at page 500
30
[2011] EWHC 2443 (Fam) para 34
26
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respect is accorded to her prior wishes, feelings beliefs and values as a way of continuing her
story in a way that is consistent with what has come before.
It seems that in order to be accorded significant weight the prior views of M must be
specifically directed at the issue in hand, that is withdrawal of ANH in the condition of
minimally conscious state. “There is no evidence that M ever specifically considered the
question of withdrawal of ANH, or ever considered the question whether she would wish
such treatment to be withdrawn if in a minimally conscious state”.
31
The requirement for
such a high specificity of evidence in effect “brushes aside the most compelling testimony of
the family members based on years of experience and personal knowledge of the patient’s
values.” 32
Conclusion
Advances in medicine increasingly allow doctors to preserve the lives of patients. But just
because they can does not mean that they should. Whether they should depends on an
evaluation of best interests, where the patient lacks capacity. The goal of best interests’
decision making is not to decide what the patient would have wanted but rather to ascertain
the overall benefits and burdens of the treatment options. The best interests’ assessment is
clearly patient focussed because it requires consideration of the interests of the incompetent
individual. Thus Buchanan and Brock argue that whether life-sustaining treatment is in a
patient’s best interests depends upon whether life is worth living for the patient33.
As Nicholas and Gillett note,
31
Ibid. para 230
Ho Mun Chan, ‘Sharing death and Dying: Advance Directives, Autonomy and the Family’ (2004) Bioethics
18 (2):87–103, 92
33
A. Buchanan and D. Brock Deciding for others: The Ethics of Surrogate Decision making (Cambridge: CUP,
1989) at page 123
32
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Clinical choices are not isolated from all else that happens in people's lives but are
part of an on-going narrative. Moral choices made, like all decisions, are part of an
effort to live a life that has coherence and meaning34.
Some may consider that avoiding the harm of cessation of basic interests (life itself) takes
priority over giving effect to the patient’s narrative. Although not an absolute rule, society
considers the preservation of life to be a fundamental good35 and therefore the law supports a
very strong presumption in favour of preserving life. In W v. M Baker J. considered that
preservation of life had the greatest weight in the best interests’ balance sheet. If the principle
of preservation of life is such a weighty factor in the balance sheet appraisal only significant
harms of being kept alive act as an effective counter- balance. Are the prior views of the
patient, that he would consider prolongation of life in such circumstances a significant harm,
an effective counter-balance? If the individual is to override the public interest in preserving
life he must do so in clear terms36 and the law places a “‘heavy burden’ on those who are
advocating a course which would lead inevitably to the cessation of a human life”.37
Following the High Court judgment in W v. M the prior views of the patient, articulated by
those close to the patient, seem to require a high level of specificity in order to be accorded
significant weight. Not only the circumstances but also the treatment to be refused should be
identified by the patient.
Whilst of course not wishing to undermine the need for sufficient certainty of the patient’s
views in difficult decisions involving withdrawal of ANH it is proposed that the narrative of
the patient should not be marginalised in the best interests’ decision making process.
34
B. Nicholas and G. Gillett, Doctors' stories, patients' stories: a narrative approach to teaching medical ethics
(1997)J. Med Ethics 23: 295-299, 296
35
Re T: Adult Refusal of Treatment [1993] Fam 95, page 112 E per Lord Donaldson MR
36
Ibid.
37
W Healthcare NHS Trust v. KH [2004] EWCA Civ 1324 para 30 per Brooke LJ
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Currently, the application of the best interests test in cases involving withdrawal of ANH
overemphasises preservation of life at the expense of human dignity and the
continuation/cessation of the patient’s story. Some rethinking of the weight given to the
patient’s values, prior wishes and feelings and the practical way of evidencing them is
required to ensure that the patient’s narrative is effectively heard.
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