David Oliver: “Progressive dwindling,” frailty, and realistic expectations
BMJ 2017; 358 doi: https://doi.org/10.1136/bmj.j3954 (Published 05 September 2017) Cite this as: BMJ 2017;358:j3954
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David Oliver points out in his excellent comments that many of us will have been with relatives who have failed to grasp that the death of a frail, elderly patient has been in the offing for months if not overdue. As Prince Charles expressed it about the death of his grandmother, “Somehow, I never expected it would come”, and in one way the more it is overdue the more people come to believe it will not happen.
To a considerable extent we, as a profession, are responsible for this. We have overplayed what can be achieved medically, been optimistic – for reasons of kindness or overconfidence – rather than realistic -- and have ducked difficult conversations. We also need to accept responsibility for our contribution to the increasing frailty and sometimes distress following our heroic efforts at treating interim disorders. The latter have become an end in themselves and, as I heard at a meeting last year, that if the detailed computerised figures suggest a potential – even if possibly short term - benefit from ITU admission, then that is not only a justification enough for going ahead but intervention becomes almost mandatory.
Frail, elderly people should not be admitted to care or nursing homes without fairly frank discussions with patient and relatives about resuscitation status. In some it happens already. For all patients on discharge from hospital but where the prognosis is poor and future admission probable, there should be a discussion about dying with the patient and family, but this applies particularly to those coming towards the end of life including the very frail elderly. It is a charitable way of pre-empting inappropriate treatment by the next medical team to be involved. Where death has been distressing because families have pushed for unrealistic care they need to be told about the part they have played in any distress caused if we are to change behaviour long-term. Perhaps too we need to return to the old distinction between discussing the “how” someone came to die and leave the “why” to moral philosophers and religious pundits.
Competing interests: No competing interests
The issue of over-expectation by relatives and patients can only be addressed by two actions: improved communication by all staff involved in their care and a campaign to inform the public about outcomes for this group of people.
Communication is the responsibility of all professionals: medical and non-medical; primary and secondary care. To often we look to each other rather than act.
The publicity campaign is needed to ensure the information we know as professionals about outlook becomes known by all of society so decision making is informed and smoother
Competing interests: No competing interests
David Oliver's acknowledgement of progressive dwindling is welcome but there are several further steps for consideration to move from recognition of the issue to resolution.
The medical model of diagnosis and treatment in its simplest form is wanting for "progressive dwindlers", so is the promoting independence of social care and the ministrations of palliative care for people who are not actively dying but are on a glide path of increasing need. Talk and initiatives of joint working, integration, all well intentioned, simply is not enough.
We need to start by defining need and purpose, which is why we proposed in our 2014 paper (cited by Oliver) the concept of "Formative Care", simply optimising the life quality of an individual reframed by their health status and dependency on care.
This area of health and care is the elephant in the room marked sustainability and resilience and thus far there has been no sign of coherent policy development.
Competing interests: No competing interests
Kate Masters has recently described (1) being ‘tipped over the edge’ when Dr McCartney became the latest in a long line of doctors, who in Kate’s opinion are inappropriately pinning the blame for various CPR-related problems on others as opposed to accepting the level of blame which correctly rests on the medical profession. I happen to share Kate’s opinion about that – and I ‘perceive’ something similar in Professor Oliver’s paper. I am not stating that this over-deflection of blame, is necessarily ‘nefarious’ [for want of a better word] – I am tempted to believe that it is the result of ‘where doctors are standing’ and ‘where relatives a standing’ being different places.
I think it was cholera which was the ‘healthy at breakfast, and dead before supper’ illness. I will not be considering treatment failures, nor will I be considering any effect of ‘confidentiality’ in this piece. Nor will I be discussing the complaints process, beyond observing that if a complaint reaches the stage when experts such as Professor Oliver become involved, the outcome is almost invariably seen as unsatisfactory by at least one of the parties involved. I will stick to communication and logic. I am ‘informed’ by an upset bereaved relative who contacted me when an elderly parent died in hospital (2). It is blindingly obvious, that in her case, communication was dreadful.
I am not entirely happy with this assertion in Dr Oliver’s paper:
‘Often, however, the medical care was good or exemplary, communication was open and frequent, but still the complaints and misunderstandings came.’
If the communication is open and frequent, it seems to imply that relatives are either stupid or vexatious – why else, would there still be complaints?
I have something of a problem with those patients whose increasing frailty has not been accompanied by a history of obvious hospital admissions, etc: I wish to point out that some very frail people ‘do just look old – they do not look ‘ill’ to relatives who are not consultants in geriatrics’. Such a person can be admitted to hospital because of an event – a fall, an infection, whatever – which because of that frailty, can leave relatives thinking ‘granny was old, but she wasn’t ill before she went to hospital with a bad cough – she was dead within days, so they didn’t want to keep her alive’.
To avoid this, I would suggest a few rules of communication: my ‘guide here’ is the question ‘how do we prevent it from looking like ‘a cover up’ afterwards’. I’ll leave it for clinicians – nurses, junior and senior doctors – to tell me if their ‘protocols and behaviour’ fit well with these ‘rules’:
1) Relatives need to be told about ‘frailty’ very quickly when the frail patient is admitted: they must be told ‘your loved-one is in fact quite frail and much less resilient than most people – sometimes problems such as the one your loved-one has got, will kill frail patients even if we are doing are very best to treat them’. Telling the family once the deterioration has set in, is too late – by then, the explanation can be ‘seen as part of a cover up’;
2) Because deterioration can be rapid, questions from relatives about the patient’s health need to answered ‘immediately’ - and ideally by the clinician who is asked. Please do not have a relative asking one evening, and a nurse or junior doctor replying ‘you need to ask the consultant about that, tomorrow’;
3) Phone calls enquiring about the patient’s health, should elicit honest and informative answers ideally during the call, or failing that by means of a call-back very soon afterwards.
I completely agree with the first part of this [I am not so sure about the second part – but it could well be true, in this ‘social media’ age]:
‘We have somehow to explain this better to a public who may not be ready for the message and don’t readily want to discuss dying or frailty—or the complaints will grow more quickly than the population ages.’
1 http://www.bmj.com/content/358/bmj.j3831/rr-10
2 https://www.dignityincare.org.uk/Discuss-and-debate/Dignity-Champions-fo...
Competing interests: No competing interests
I concur wholeheartedly with the views expressed by Prof Oliver. Although older people living in institutional care are generally the frailest cohorts, we are increasingly coming across community dwellers with significant frailty and functional decline, somehow coping on the brink, in need of institutional care and advance care planning. The median age of patients admitted to our geriatric wards has steadily increased and could easily be in the early 80s, if not later. Care home residents are generally the frailest with at least a quarter being dead at one year1. A better predictor of mortality in such patients would be to look at the number of primary care visits1 prior to the final hospital admission as its not very uncommon to see these patients declining significantly in the community.
1.Sunil M. Shah et al Mortality in older care home residents in England and Wales. Age and Ageing, Volume 42, Issue 2, 1 March 2013, Pages 209–215.
Competing interests: No competing interests
Re: David Oliver: “Progressive dwindling,” frailty, and realistic expectations
‘Progressive dwindling’ or ‘terminal decline’ and end-of-life care.
David Oliver’s commentary highlights the some of the difficulties faced by geriatricians responsible for the care of frail older adults. Accumulating evidence shows that a key aspect of the frailty syndrome is its relation to adverse outcomes including hospital admissions, falls, fractures and mortality.1-4 Oliver adopts the terminology of ‘progressive dwindling’ to refer to the progressive and accelerating functional decline that may occur at the end-of-life in very old people. Other writers have referred to this process as one of ‘terminal decline’ or ‘terminal drop.’ 5 Empirical evidence of terminal decline has been reported for cognitive functioning, 6 and subjective health measures.7 Our recent study using electronic health records in people aged 80 years and over, revealed a substantial terminal decline in blood pressure in the final two years of life that was not observed in patients who did not die.8 Diehr and colleagues observed that ‘It is difficult to distinguish changes in health due to aging from those related to dying.’7 Researchers and clinicians should aim to determine whether these processes are distinguishable in order to improve end-of-life care for older people.
Rathi Ravindrarajah, Research Associate
Martin Gulliford, Professor of Public Health
King’s College London, School of Population Health Sciences
References
1. Clegg A, Bates C, Young J, et al. Development and validation of an electronic frailty index using routine primary care electronic health record data. Age and Ageing 2016 doi: 10.1093/ageing/afw039
2. Clegg A, Young J, Iliffe S, et al. Frailty in elderly people. The Lancet 2013;381(9868):752-62. doi: 10.1016/S0140-6736(12)62167-9
3. Fried LP, Tangen CM, Walston J, et al. Frailty in older adults: evidence for a phenotype. The journals of gerontology Series A, Biological sciences and medical sciences 2001;56(3):M146-56. [published Online First: 2001/03/17]
4. Xue Q-L. The Frailty Syndrome: Definition and Natural History. Clinics in geriatric medicine 2011;27(1):1-15. doi: 10.1016/j.cger.2010.08.009
5. Palmore E, Cleveland W. Aging, terminal decline, and terminal drop. Journal of gerontology 1976;31(1):76-81. [published Online First: 1976/01/01]
6. Siegler IC. The terminal drop hypothesis: Fact or artifact? Experimental Aging Research 1975;1(1):169-85. doi: 10.1080/03610737508257957
7. Diehr P, Williamson J, Burke GL, et al. The aging and dying processes and the health of older adults. J Clin Epidemiol 2002;55(3):269-78. [published Online First: 2002/02/28]
8. Ravindrarajah R, Hazra NC, Hamada S, et al. Systolic Blood Pressure Trajectory, Frailty and All-Cause Mortality Over 80 Years of Age. Cohort Study Using Electronic Health Records. Circulation 2017 doi: 10.1161/circulationaha.116.026687
Competing interests: No competing interests