It might seem reasonable that doctors, who find themselves suddenly inserted into the midst of a patient’s life, make quality of life (QoL) assessments. They communicate with patients and family members, discover all that there is to know about their background, their habits, vices and hopes, and form an opinion about how the disease will affect the future. But doctors are wary about quoting those opinions in documentation that pertains to ceilings of treatment or resuscitation. They know that if a decision is made on the basis of a ‘poor QoL’ and the patient or family disagree, the potential for criticism is huge. Accusations of arrogance, of pretence to omniscience, of a God complex, may follow.
Doctors make predictions about how things will turn out. That is an essential medical skill. We know that if the disease does not respond the patient will at best be weakened, and at worst will die. When the impairment results in inability to look after oneself, engage in conversation or interact with the world, in depression or in chronic discomfort, we begin to regard QoL as diminished. However, the very word ‘diminished’ suggests some sort of measure of quality. If a patient’s QoL is said to be worse, it suggests that we have some sort of comparator. What is that comparator? Is it based on our definition. If so, that definition will be the product of our upbringing, culture, faith and life experience. By making comparisons between enjoyable lives and intolerably burdensome lives we allow our own values to influence the therapeutic process. Disentangling those subjective impressions from the actual experience of our patients is a huge challenge. Louise Aronson, a Geriatrician at the University of California, explored this issue in a New York times article recently (‘Weighing the end of life’), and made the point,
‘To many people’s surprise, most of my patients are as satisfied with their lives as they were when they were less debilitated.’
So, for my own sake and others’, I have looked into where we stand on the question of quality.
The case of David James
QoL issues were crystallised, dramatically, by a recent judgment in the Court of Protection concerning David James, a 67 year old man in a ‘minimally conscious state’ who could not leave intensive care. A hospital Trust applied for permission not to provide further organ support or resuscitation should he suffer another crisis, but the judge upheld the family’s challenge. Although the Trust won an appeal, shortly before Mr James’s death (on 31st January 2012), the first judgment is worthy of a detailed analysis.
An intensive care doctor, when asked about the appropriateness of continued organ support, explored (among other considerations) the patient’s quality of life.
‘In the highly unlikely event that DJ survives his current illness, he will not be able to function as the musician he was previously due to the neurological deficits (hemiparesis) that he has developed. I have collected significant evidence that leaves me with the view that DJ would prefer to be dead rather than be unable to make music.’
According to the judgment however,
‘the only basis for this last observation was a conversation with a nursing sister who says that DJ had apparently told another member of staff early in his admission to intensive care that he would prefer to die than not be able to play the guitar. Not surprisingly, DJ’s family has been distressed at the use to which Dr _ put this snippet of information. In his second report and in his oral evidence he retracted without further comment the observation about making music.’
Here we see how narrow insights into a patient’s personal, non-medical, circumstances can buckle under the weight of the medical decisions that rest on them.
In the judgment, descriptions of DJ’s interactions are given, and the difference in interpretation by medical staff and family members become clear.
For instance, the intensive care doctor provided this record of a family visit:
‘MJ and PJ (relatives) arrived by the bedside; DJ showed clear signs of recognition, smiled at their approach and mouthed what appeared to be words. He seemed to know appropriately when asked if he was feeling alright by his wife. She combed DJ’s hair, during which DJ smiled. DJ was given a paper to read by his son. DJ turned the pages with his left arm. It is not clear to me whether he was reading any of the articles or looking at the pictures in the paper, however he smiled while looking at the paper. During this time he put on and took off his glasses … PJ encouraged his father to play a simulated keyboard on [an] iPad. DJ was clearly interested in the iPad and its mount. He could not play any recognisable tunes on the simulated keyboard, even after his son demonstrated several simple melodies. PJ then opened a communication program with pictographic representations of moods (for example: happy face/sad face/angry face) with a written description under each picture. PJ asked his father to show him what emotion he was feeling. I did not see a consistent response from DJ. DJ appeared to enjoy watching videos on his son’s phone.’
To me, a non-neurologist with no specific expertise in severe brain injury, the term minimally conscious seems a little harsh for this situation. Indeed the judge made this comment,
‘…there is a spectrum of minimal consciousness extending from patients who are only just above the vegetative state to those who are bordering on full consciousness. I would add that to that extent the word “minimal” in the diagnostic label may mislead.I accept that he qualifies for a diagnosis of being in a minimally conscious state, but his current level of awareness when he is not in a medical crisis might more accurately be described very limited rather than minimal.’
Another doctor invoked quality of life when justifying his view there should be no escalation in care if DJ suffer another episode of severe sepsis.
‘ I would argue that further treatment for septic shock with hypotension and any artificial renal support would not be of overall benefit to DJ as such treatments would not return him to his former pleasures in life. ‘
And again, concerning the question of CPR…
‘… the very real risk of lack of oxygen to the brain as a result of any protracted attempt would surely not be in DJ’s best interest given his interest in life.’
His diminished abilty to enjoy ‘interest in life’ is invoked as a reason not to resuscitate. The judge then writes of the doctor,
‘He (the doctor) would not revise his opinion unless matters have improved to the point where DJ was interacting with staff and actively participating in physiotherapy.’
In contrast, family members provided evidence to show that he was interacting:
‘JJ is DJ’s daughter… She produced photographs showing him interacting with members of the family. She said that at the moment, he is not looking so unwell. He has put on some weight and looks more lively and alert. He cannot speak because of the tracheostomy but his face is expressive and the family is sure that he can lipread questions such as “why aren’t you in work?” or “are you going out tonight?” She says that he worries about them. He is interested in family events, news, music and the radio. He is interacting more with the iPad.’
And so to the judgment. ‘General considerations’ for and against further organ support are listed:
Life itself is of value and treatment may lengthen DJ’s life/He currently has a measurable quality of life from which he gains pleasure. Although his condition fluctuates, there have been improvements as well as deteriorations/It is likely that DJ would want treatment up to the point where it became hopeless/His family strongly believes that this point has not been reached/It would not be right for DJ to die against a background of bitterness and grievance
The unchallenged diagnosis is that DJ has sustained severe physical and neurological damage and the prognosis is gloomy, to the extent that it is regarded as highly unlikely that he will achieve independence again; his current treatment is invasive and every setback places him at a further disadvantage/the treatment may not work/the treatment would be extremely burdensome to endure/it is not in his interests to face a prolonged, excruciating and undignified death
The judge goes on to explore the process of ‘best interests’ assessments.
‘…the assessment of best interests of course encompasses factors of all kinds, and not medical factors alone, and reaches into areas where doctors are not experts…’
Finally, in deciding in favour of the family, he writes:
‘Although DJ’s condition is in many respects grim, I am not persuaded that treatment would be futile or overly burdensome, or that there is no prospect of recovery.
In DJ’s case, the treatments in question cannot be said to be futile, based upon the evidence of their effect so far.
Nor can they be said to be futile in the sense that they could only return DJ to a quality of life that is not worth living.
Although the burdens of treatment are very great indeed, they have to be weighed against the benefits of a continued existence.
Nor can it be said that there is no prospect of recovery: recovery does not mean a return to full health, but the resumption of a quality of life that DJ would regard as worthwhile. The references, noted above, to a cure or a return to the former pleasures of life set the standard unduly high.
I consider that the (medical) argument … significantly undervalues the non-medical aspects of DJ’s situation at this time.
Moreover, as Hedley J put it in NHS Trust v Baby X  EWHC 2188 (Fam), a life from which others may recoil can yet be precious. … In this case, DJ’s family life is of the closest and most meaningful kind and carries great weight in my assessment.’
Being a doctor, one who naturally tends to side with other doctors in such arguments, I have re-read the last paragraph many times. It says it all. We, doctors, are poorly qualified as observers when it comes to making quality of life assessments. The information that we have is sparse, our insights into the satisfaction that can be gained from small things (fleeting familial interactions for instance) are tainted by bias, and the weight that we give to other factors, such as technical futility or even resource limitations are not relevent to the patient.
Fallibility of QoL assessments: the evidence
Every study on quality of life assessment that I have read comes up with the same conclusion – doctors do not do it well. For example, Sleven et al gave QoL questionnaires to 108 patients and their doctors. A four point scale (FPS – from ‘very good’ through to ‘very bad’) and a linear analogue self-assessment (LASA) scale for QoL, anxiety and depression was employed were used. The correlations between patients and doctors were poor, with most values between 0.3 to 0.4, where 1.0 equals a perfect match. The authors concluded,
‘Firstly it is clear that doctors could not adequately measure QoL.’ and, ‘QoL is a concept that inlcuides many subjective elements, and it is therefore perhaps not surprising that a doctor may not have the necessary knowledge’of the patient’s feelings to evaluate their QoL accurately’.
Another study, by Perron et al, analysed the assessments of cognitive ability, independence with activities of daily living, depression, social isolation and general QoL in 255 DNACPR patients, as made by 9 physicians. The results showed that,
‘Physicians systematically underestimated their DNR patients’ mental state and physical condition: 23.9% of patients with a normal MMSE were considered by their physicians to be mentally abnormal, 28.7% with a normal ADL score were seen as physically moderately or totally dependent. For quality of life, they misclassified 44.1% of the patients reporting a good quality of life. ‘
‘Our two main results were, first, that quality of life intervenes in more than 70% of the DNR decisions taken by the medical staff. Thus, when implementing a DNR order, physicians are very often influenced by their perception of patients’ quality of life. Second, physicians systematically underrate their DNR patients’ quality of life components (including mental state, physical and social condition, degree of pain and depression).
‘These discrepancies may be attributable to working in an acute care setting, where the physician-patient relationship is superficial and centered on diagnosis and treatment.’
Other studies show that we may have the wrong idea about long term outcome after resuscitation. De Vos et al found that of ‘827 resuscitated patients, 12% (n = 101) survived to follow-up.’ This appears to confirm what we know, that CPR is not in itself a particularly effective treatment. However,
‘Most survivors were independent in daily life (75%), 17% were cognitively impaired, and 16% had depressive symptoms. Factors during and after resuscitation, such as prolonged cardiac arrest and coma, did not significantly determine the quality of life or cognitive functioning of survivors. The quality of life of our CPR survivors was worse compared with a reference group of elderly individuals, but better than that of a reference group of patients with stroke.’
…and this leads to the conclusion that,
‘Cardiopulmonary resuscitation is frequently unsuccessful, but if survival is achieved, a relatively good quality of life can be expected. ‘
ie: if you survive you may do quite well. So is it necessary for us to agonise quite so much over QoL in the context of resuscitation? If the patient dies they will not suffer a poor QoL (only the indignity of the CPR attempt), but if they survive, the generally accepted wisdom that their existence will be blighted by bodily disability, dependency on others and depression, may not be true.
It is still necessary for us to consider who may or not survive of course, and the de Vos study did find that two factors were independently associated with poor outcome – the ‘reason for admission’ and ‘age’. Although age does matter, we do not use chronological age when documenting DNACPR decisions. Of itself it is over-simplistic and does not take into account the great variation in underlying fitness that exists. However, at the upper extreme of human life expectancy, it is perhaps forgivable, as long as sufficient weight is given to underlying health issues and pre-existing organ dysfunction.
The Resuscitation Council gives the following advice, in situations where the burden of treatment appears to outweigh the benefits (ie. poor projected QoL).
‘These difficult situations are a potential source of confusion. Doctors cannot be required to give treatment contrary to their clinical judgement, but should be willing to consider and discuss patients’ wishes to receive treatment, even if it offers only a very small chance of success or benefit. Where attempted CPR has a reasonable chance of successfully re-starting the heart and breathing for a sustained period, and patients have decided that the quality of life that can reasonably be expected is acceptable to them, their wish for CPR should be respected’
Here then, greater weight is given to the patient’s understanding of quality than to the doctor’s. In the rare cases where the doctor feels unable to agree with this, such is their conviction that CPR is wrong, obtaining a second opinion or a legal decision is suggested.
And what of the GMC? Its guidance ‘End of life care: Discussion about whether to attempt CPR’ includes this paragraph:
132. … You must approach discussions sensitively and bear in mind that some patients, or those close to them, may have concerns that decisions not to attempt CPR might be influenced by poorly informed or unfounded assumptions about the impact of disability or advanced age on the patient’s quality of life.
So how do I advise my trainees as they learn to manage resuscitation decisions and end of life situations? How do we allow doctors to apply their knowledge and experience of how treatments affect patients’ function and at the same time discourage them from referring to such projections?
As usual it is all about the patient. We rely on patients to provide insights into their understanding of that projection. And if the patient cannot help us we turn to the families. Only the foolhardy march around the hospital making unilateral decisions about their patients’ futures. But at some point it will become necessary to meld the medical insights that they can provide as doctors with the non-medical considerations that only patients or their loved ones can provide. Finding this balance is the real challenge.
The safest way forward will be to do everything, all the time, to preserve and lengthen life. For if it is true that we cannot be sure that even an extremely ‘diminished’ and inactive life does not bring rewards, then we must never be tempted to regard an image of the patient in the future requiring complete personal care and enjoying very little external interaction as without value. This must be balanced against a temptation to push our patients’ bodies to the very limit. The danger in doing this is that we may condemn many people who are genuinely near the end of life to time that truly has no quality. Advising patients and relatives in these circumstances requires great experience, and although the evidence seems to show that we cannot hope to understand how they really feel, our understanding of how medicine, pathology and the mysterious process of recovery intersect is surely too valuable to be discarded entirely.
Acknowledgment: Lucy Series, who writes The Small Places blog, explored the David James and other, similar cases recently. Her insights were very valuable.