I recently cared for Ernest,* an 87 year old gentleman who spent around two weeks on my ward. Prior to admission his health was poor. He was bed-bound due to the late stages of a degenerative neurological disease, and had associated cognitive impairment. He had several other health complaints, and had been in hospital multiple times in the previous year with infections. He had always responded to antibiotics but his condition and level of interaction with the world had declined with each admission. On arrival to our ward I noticed that he did not have a DNAR order and, since he was not able to discuss his wishes, I looked to the family for information and to broach this subject. I was surprised to find that several vocal family members were adamantly against a DNAR. I had lengthy discussions explaining my reasons for believing that attempts at resuscitation would be futile and that setting limits of care was important to ensure we pursued quality, not just quantity of life. They listened, seemed to understand, and themselves identified his frailty, deterioration over the last year, and decline in his quality of life. However they strongly objected to us making him “not for attempted resuscitation.” As the end of the week approached I felt uncomfortable about the lack of a DNAR order, and about the possibility of this frail gentleman suffering a brutal and undignified exit to the world should his heart stop. I tried to communicate my personal discomfort to the family, and the reasons for it in the context of my experience of the realities of CPR attempts in those with poor underlying health. I also made it clear we were not asking for them to make this decision, but wanted to integrate their views into the medical decision-making process. I was aware of the potential to be seen as being coercive and paternalistic, but felt a duty to act in what I believed to be the best interests of my patient. We treated him with escalating regimes of iv antibiotics, iv fluids and nutritional supplements with no improvement, and by the end of the first week the family reluctantly withdrew their objections to a DNAR. Unfortunately he did not respond to treatment, his organs began to shut down and he drifted into a state of unconsciousness. At the end of the second week the Consultant and I had further difficult conversations with his family members about the withdrawal of antibiotics, fluids and nutrition. He died; peacefully and comfortably with his family present.
I thought a lot about Ernest and his family at the time and in the weeks since. I was taken aback by the strong objection to a DNAR order and, not for the first time, wondered about the expectations of the public of medical interventions. I also wondered what I could and should have done differently; where the line is between professional advice and personal opinion; and to what degree families’ wishes should be followed in the face of futility.
An article in the NEJM addressed the question “Is it always wrong to perform futile CPR?” and suggested that there are some circumstances in which it may be right to proceed with futile treatments at the end of life for the sake of the family: for those left behind. I recognise this argument, but my personal beliefs align more with those who contend that this is never right, as it treats the patient as a means to an end, rather than an end in themselves (see Kant), and causes harm to the patient. The Hippocratic Oath is very clear on the duty not to do harm and to recognise one’s limits.
This quote from a 1988 letter to the editor of NEJM seems even more appropriate today, as the options for what can be done grow, whilst what should be done, is not always considered :
“It seems we have lost sight of the difference between patients who die because their hearts stop and patients whose hearts stop because they are dying.”
Conversations about the limits of medical intervention, the inevitability of death, and the need for priorities other than duration of life are not broached often enough or openly enough. The aim of talking more openly is not to remove hope, but to give patients the space to exercise true choice and autonomy, to define their own priorities, and to live out the time they have left in the way they choose. It also releases the medical team to do all we can with total conviction, comforted by appropriate limits. We live in an ageing society. More people now die from chronic conditions after a long period of declining health, or from a combination of factors best defined as frailty. Atul Gawande, Professor of Surgery at Harvard Medical School, when asked by a family member whether one of his patients was dying admits to struggling to know how to answer:
“I wasn’t even sure what the word “dying” meant anymore. In the past few decades, medical science has rendered obsolete centuries of experience, tradition, and language about our mortality, and created a new difficulty for mankind: how to die.”
For patients in the late stages of chronic health conditions such as heart failure and COPD the week or month of their death is not predictable, but the fact that their lifespan is limited is fact. Starting these conversations is difficult, and communicating the concept of futility can be a huge challenge. What does futility really mean? What % survival from CPR does the public think is achievable and what would they define as futile? Is this the same definition as doctors? It is no wonder that we struggle to find the words, but this is no excuse. The medical profession must not collude in the conspiracy of eternal life, and the perception of death as failure.
So how do we move forward? A recent JAMA article has suggested a standardised approach to determining DNAR status. Reading the conclusions, the most striking thing is that they sound like simple common sense: “Whenever there is a reasonable chance that the benefits of CPR might outweigh its harms, CPR should be the default option. However, in imminently dying patients….The default option in this situation should be an order to not attempt CPR.” The problem is that life is rarely so black and white, and many patients arrive at hospital with a potentially life-threatening illness but are not imminent dying. It is these patients who still need appropriate limits of care setting, but this is not built into our day to day practice.
The conclusions of the NCEPOD report “Cardiac Arrest Procedures: Time to Intervene?” have been widely reported but often with a negative spin, painting doctors as the enemy of patients “fighting for life.” This is an emotive subject and the media are rarely helpful, fuelling fears of patients having decisions made for them and being abandoned at the end. The Daily Mail can always be relied upon to deal as insensitively as possible with these complex subjects (see here and here, where they conflate the question of the appropriateness of DNARs with communication issues and accusations of neglect, making it difficult for the public to consider the issue in isolation.) The Chair of the NCEPOD report has identified the fact the we all need to recognise and accept the limits of what medicine can achieve. But who does he mean by “all?” This is a societal issue, and discussions need to leave the hospital ward and GPs’ surgery and find their way into people’s homes.
Reflecting on my interactions with Ernest’s family, I was heartened by this quote from Atul Gawande in The New Yorker:
“People die only once. They have no experience to draw upon. They need doctors and nurses who are willing to have the hard discussions and say what they have seen, who will help people prepare for what is to come…”
I will continue to have these hard discussions, but hope that in time they will be made easier by a greater awareness and preparedness from the public. Death is a part of life and our continued silence only makes it more deafening when it arrives.
See The Health Culture blog: “Actions surrounding the moment of death are highly symbolic,” MedicalEthicsandMe‘s thoughts, and lots of posts on the Medical Futility blog for further insightful discussion.
* names changed to maintain confidentiality