When and how to discuss “do not resuscitate” decisions with patients
BMJ 2015; 350 doi: https://doi.org/10.1136/bmj.h2640 (Published 20 May 2015) Cite this as: BMJ 2015;350:h2640
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In Tracey, no distinction is made regarding the mode of dying. Mrs Tracey had advanced lung cancer, a cervical spine injury and pneumonia. Testimony given by David Pilcher, chairman of RCUK, states that the chance of successful resuscitation in such a case is extremely low. As far as has been reported, Mrs Tracey had no cardiac problems; she was therefore likely to die of what Caldwell describes as “ordinary dying”, from overwhelming cancer and infection. Nonetheless, the court found the decision should have been discussed with her. The law as it stands makes no distinction regarding the mode of dying, meaning resuscitation should be discussed with every patient who wishes to do so unless they are likely to suffer physical or psychological harm.
CPR was originally introduced for arrhythmia caused by myocardial infarction and was not intended for frail patients at the end of their lives. However, when a hospital patient stops displaying signs of life, staff will not know whether this is due to arrhythmia, and the presumption is therefore to resuscitate unless a DNAR order is in place. Making such decisions in advance is vital.
We agree that systems such as the UFTO may provide a better approach than focussing only on DNACPR forms. However, the associated guidance does not appear to have been updated in light of the court of appeal judgment.1
Although the current system is by no means perfect, we believe mechanisms which increase a patient’s involvement in decisions regarding his or her care are likely to be positive, and the law around CPR decisions provides for increased involvement. An absolute definition of frailty is difficult and every patient should be approached as an individual and involved as much as possible in discussions regarding their care, subject to the caveats in Tracey.
Competing interests: No competing interests
The word ‘resuscitation’ creates false expectations in patients and families and now it seems also the judiciary. The word is defined as “the act of bringing someone or something back to life” (1), and this meaning is widely understood. Dramatic end of life medical interventions do not and cannot bring people who are dying miraculously back to life. While “CPR” can be effective in those whose hearts have unexpectedly stopped, 'resuscitation’ can play no part in dignified dying, and the term should be abandoned.
1. Cambridge Dictionary online
Competing interests: No competing interests
In response to the “Analysis” article by Etheridge and Gatland, in BMJ 27 June 2015, “When and how to discuss ‘do not resuscitate’ decisions with patients”.[1]
We suggest it is time for doctors to stop using Do Not Resuscitate (DNAR, DNACPR) orders all together.
Instead, all patients at risk of life threatening medical emergencies should have a ‘person held’ individual emergency health care/ resuscitation plan.
When a patient’s medical condition puts them at risk of having a life threatening event or deterioration their doctor needs to fully discuss this with them and their close family members, together with all the treatment options and their potential efficacy, benefits and burdens. This needs to include potential intensive care and resuscitation measures. A written, person held emergency care/ personal resuscitation plan can then be produced and jointly agreed by the consultant and patient including the agreed ‘best care’ in the event of a gradual or sudden deterioration.
This is a system we have developed and used for children in the East Midlands for over 10 years. [2,3]
Terms including ‘do not resuscitate’ or ‘ceiling of care’ should be avoided as they imply denial of care and lack of worth to the patient and their family. An emergency care / personal resuscitation plan stipulating the background condition of the patient and how they may deteriorate, the symptoms and signs to expect and appropriate response from lay and professional carers is regarded as extremely useful by patients, their family members and carers, as well as emergency services, and is therefore much easier to introduce.
[1]. Etheridge Z, Gatland E. When and how to discuss ‘do not resuscitate’ decisions with patients. BMJ 2015; 350:hh2640.
[2]. Wolff A, Browne J, Whitehouse WP. Development of personal resuscitation plans instead of “do not resuscitate” orders for children with life-limiting conditions. Dev Med & Child Neurol 2004:46;Suppl 100;45.
[3]. Wolff A, Browne J, Whitehouse WP. Personal resuscitation plans and end of life planning for children with disability and life-limiting/life threatening conditions. Arch Dis Child Education & Practice 2011; 96: 42-8.
Competing interests: No competing interests
The Tracey Case makes it clear that DNAR instructions should not be issued without discussion with (or informing) the patient.
It seems wrong that a dying patient (let us say with malignancy, cachexia, pleural effusions, ascites and more) should have to discuss the subject at all unless he wants to.
This judgement means that a patient must be consulted before his doctor decides to tell junior and inexperienced staff, and those unfamiliar with the case, not to assault the dying man.
This can't be right. But it is the law.
Competing interests: No competing interests
Like the famous Russian hurdler Ivor Knockabollockov, it seems that the new changes to the DNACPR decision making process will provide one too many obstacles in delivering common sense, compassionate care.
On a serious note, the changes will in effect lead to less DNACPR decisions being made. The majority of decisions currently are made on a Consultant ward round; a friend and family free time. If the patient does not have capacity then either the family need to be brought in or an IMCA needs to be provided, which takes all time. My fear is that this policy will lead to an increasing number of inappropriate resuscitations.
The new legal requirements for discussing with the patient, family, friends and IMCA are a complete nonsense if the Intensive Care Unit is not adopted for post-arrest care. How many times has a patient that you have been caring for been for “full escalation” only for the ICU Consultant (rightly or wrongly) to say no to an admission. Resuscitation is brutal and comes with a huge failure rate at the best of times but without support from the Intensivists is utterly futile. Maybe there should be ICU DNACPR daily ward round?
The biggest problem remains for the out-of-hours decision makers, often the medical registrar at night. An increasingly complex situation now arises whereby a patient who is approaching the end of their natural life and is not appropriate for resus is not made DNACPR because there is no family or friends available to discuss the matter with. Even if the family are requested to come into hospital at night, a legal quandary exists whereby DNACPR order is written at this time it is invalid.
Even having a proactive approach has innate difficulties. Decisions in capacitous patients are time specific. Unfortunately, the peri-arrest situation deems this impossible.
Competing interests: No competing interests
Within living memory the Hospice Movement has rescued patients with an established terminal illness from dying in an acute hospital bed to ensure a dignified death.
My role as a Crematorium Medical Referee convinces me that we once again face a mismatch between what is medically available and what is compassionate and appropriate.
The new group of poorly served patients are the very elderly, with multiple co morbidities, who develop a life threatening illness, often pneumonia, only to die within a few hours or a few days following emergency admission to an acute hospital.
The first decision in such situations “to prevent undignified interventions at the end of life” would be to avoid hospital admission in the first place.
So ahead of advance directives about DNACPR and discussions about ceilings of care should come DNH “Do Not Hospitalise”
Or as a reminder to everyone of the fundamental importance of patient autonomy in making such a “care denying” advance directive perhaps it should be PDNSMH “Please Do Not Send Me To Hospital".
Stephen Hall
Eridge
Tunbridge Wells TN3 9HU
BMJ 2015;350:h2460
Competing interests: No competing interests
Goldsmith and Gatland have written about a legal case with, as they say, important ramifications[1]. I was surprised, though, that they didn't mention the UFTOs (Universal Form of Treatment Options) referred to in the Tracey judgement as a good practice model for facilitating discussion [2].
I was also surprised that they didn’t include the part of the subsequent joint BMA / Resuscitation Council / RCN guidance which says that when CPR has “no realistic chance of success”, then involving people in the decision-making may mean “informing [them] of the [DNACPR] decision and explaining the basis for it”[3]. This raises important questions about when, and for which patients, there might be “no realistic chance of success”.
Surely, with the new consent law in the UK[4], ‘prudent patients’ need high quality information about the burdens and risks of CPR?
Unfortunately, quantitative questions on this topic are easier to ask than answer.
Routinely available data doesn’t differentiate between those patients who are dying because their heart has stopped; and those whose heart stops as a natural part of dying. We must, of course, try to resuscitate the former. CPR is less sensible for the latter.
We definitely need better evidence about which patients are, and are not, likely to achieve enduring ROSC (return of spontaneous circulation) after CPR. But is that enough?
Maybe we also need something more radical.
Maybe it’s about asking patients and families how they conceptualise ‘success’. Many people don’t only want to live longer. They have other priorities, too. And the most reliable way to know what someone wants is to ask. Ask early, and keep on asking, since priorities will inevitably change through the course of chronic conditions like heart failure and COPD. For cancer patients, we can start asking during treatment which aims to be curative. It might even help focus oncologists onto quality as well as quantity of life.
Shortly after the Tracey judgement, McCartney wrote about how CPR can medicalise inevitable deaths: changing last moments “from what could be a peaceful process into a medical battleground”[5]. We need to make sure that discussions about resuscitation are less damaging than CPR can be, and less traumatic than failed CPR attempts.
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[1] When and how to discuss “do not resuscitate” decisions with patients. BMJ: 2015;350:h2640
[2] See the very helpful discussion of this in: DNACPR decisions: challenging and changing practice in the wake of the Tracey judgment Clin Med December 1, 2014 vol. 14 no. 6 571-576 http://www.clinmed.rcpjournal.org/content/14/6/571.long
[3] https://www.resus.org.uk/dnacpr/decisions-relating-to-cpr/
[4] UK law on consent finally embraces the prudent patient standard. www.bmj.com/content/350/bmj.h2877
[5] Is discussing futile treatments really best for dying patients? http://www.bmj.com/content/348/bmj.g4180
Competing interests: Well before my own heart stops (which is hopefully not in the imminent future!), I would like support in thinking about and exploring my own priorities. Resuscitation will not always be my default 'choice'.
The term "do not resuscitate" (DNR) or, as in this article "do not attempt cardiopulmonary resuscitation" (DNACPR) is associated with negative connotations as families may gain the impression that a necessary and useful medical intervention is being withheld from their family member. There is a proposal that the terms DNR and DNACPR be replaced by the term "Allow Natural Death" (AND) [1], which emphasises the shift in approach from burdensome and ineffective curative interventions to palliative care with an emphasis on comfort and dignity.
1. Schlairet MC, Cohen RW. Allow-Natural-Death (AND) Orders: Legal, Ethical, and Practical Considerations. HEC Forum 2013; 25: 161–171
Competing interests: No competing interests
If I am allowed to, I would like to make a second point about cardiopulmonary resuscitation (CPR).
I became involved in 'debate' about end-of-life behaviour (EoL), in 2009, and CPR features in EoL guidance: the only thing you are certain of about EoL, is it will end with a CPA.
Of course there can be 'sudden events' when something cases an arrest during 'normal life' - for example, extreme loss of blood if a person has been involved in an accident. But the NHS attempts to achieve early identification of patients (and thereby to 'register them as known EoL') who are terminally diagnosed or thought to be EoL (where EoL usually means 'thought likely to die within 12 months').
So the following, has always puzzled me: I am fully aware that discussing CPR with a patient is often very difficult, but there is something in clinically-authored material about CPR, even for EoL situations, which is logically peculiar. Most DNACPR 'Orders', seem to be what I would term 'clinical DNACPR' - the justification for DNACPR is 'an expert clinical opinion that CPR could not be successful, based on the clinical situation before a CPA occurs'. Clinicians seem to 'like' that justification: as it isn't really a decision, provided their expert opinion is correct (and you would only test that, if CPR were attempted), there is not really a meaningful decision to be made here (whether or not someone attempts CPR, the patient will die), and the clinicians seem to like 'because it couldn't work, it is pointless to discuss CPR with the patient'.
But during known EoL, patients tend to deteriorate as death approaches: so, presumably when a patient is first terminally diagnosed, or is first categorised as EoL, attempted CPR might 'be clinically successful' - and in this situation, it is for the patient to decide whether or not CPR should be attempted (I am not going to 'prove that point' - but the Montgomery ruling, should have made it crystal clear to everyone). The patient can consider CPR, and refuse CPR by means of an Advance Decision (ADRT), if the patient decides against CPR - and an ADRT is a legally-binding instruction.
So, this is what baffles me: why, for known terminal or EoL patients, does it seem that frequently 'clinical DNACPRs' appear, without any evidence of the patient's agreement to or refusal of CPR at an earlier date, when CPR might potentially have been 'clinically successful', being present in the medical records for the patient ?
So notwithstanding the problems associated with 'asking people if they would want to be resuscitated', there really is not [in my opinion] a sound 'legal defence' to the accusation that 'failing to ask patients about CPR early during known EoL, is effectively 'culpable negligence by omission''. By failing to ask for the patient's decision while CPR might still be successful, when there was the time and opportunity to ask, but also tending to then impose 'clinical DNACPRs' once [the clinicians consider] 'asking about CPR would be pointless', the clinicians are preventing patient self-determination. I would point at a hangover of 'medical paternalism' here, except that I am aware of how difficult it is to 'discuss the dying bit', as I have previously pointed out (link below),
Mike Stone mhsatstokelib@yahoo.co.uk
Competing interests: No competing interests
Re: When and how to discuss “do not resuscitate” decisions with patients
The word resuscitation is notoriously misleading or even a misnomer, especially if it is used inappropriately, inducing a state of emotional arousal in families and patients. The word resuscitation may be misperceived as equivalent to resurrection. Practically speaking, resuscitation does not work unless there is a reversibility over the condition especially at a young age, when health individuals will up cardiac arrests and unusual incidents or accidents.
On the other hand, the DNR decision has been handed over to consultants and the person in charge who decide whether it will help or not in the events of a patient's life. In addition to terminal illnesses and the consequences related to poor health, the worst feeling patients could have or relatives could perceive is the loss of control about the end being in the hands of individuals who are not aware of the cultural, religious and educational background. Also that clinicians are passing them through a template of algorithm sets or the law about end of life issues. This leaves doctors and medical teams in a critical position, in particular when they have to discuss why they made the decision not to resuscitate without taking into account patients' beliefs, faith and cultural backgrounds. Contentious cases will end up with litigation or a feeling of having been betrayed by medical team.
Hence medical care is dented again by handing over this responsibility to the consultant leading the team. It would be nice if the consultant be part of the decision making process rather than the decision maker.
Competing interests: No competing interests