Tag Archives: futility

Critical care

I was one of the lucky ones this year and was not working on Christmas Day. After my shift on Christmas Eve I fed the cat, packed up the car with presents and headed to my brother’s house. Waiting for me was a glass of mulled wine, and a hug. Christmas Day was lovely and it was with a heavy heart that I left my family and battled the driving rain in order to get back to London for my night shift on Boxing Day. My feelings of dread were not misplaced: the shift was tough. But most of my shifts have been tough of late. I am in the midst of a six month rotation on ICU (the intensive care unit), having left the familiarity of the acute medical ward and the outpatient clinic, replacing them with a world of ventilators, alarms and intense emotions. I am used to hard work, but I find intensive care physically and emotionally exhausting. It has taken me by surprise just how difficult it is to get through the weeks and I have begun to realise that this is primarily due to a concern that not everything I am going is ‘the right thing’.

Clinicians in Intensive Care Unit

I spent a large proportion of Boxing Day night with a single patient. He was intubated and ventilated when I met him, so I found it difficult to engage with him as anything more than a body in a bed – a constant challenge for me on ICU. I spent the night watching his organs fail and escalating his treatment: I performed fluid challenge after fluid challenge; added inotropes and vasopressors and maximised their doses; corrected his electrolytes; gave bicarbonate in an attempt to improve his acidosis; watched his urine output fall to nothing and started haemofiltration. He did not improve. During the day shift whilst I was at home asleep he had a cardiac arrest. CPR was performed which led to return of a pulse. I returned and continued to try to fix his physiology, but it was futile. We all knew it. He died attached to machines and monitors: oedematous, battered and bruised. It is not a death I would wish on anyone. He had presented with an acute problem which warranted aggressive treatment but as all treatments failed it rapidly became clear he would not survive. And yet we continued. And performed CPR. And still continued. I do not know what he would have wanted, but this is not what I or his nurse wanted.

He was not the only patient I felt uncomfortable about that night. As I proceeded around the ward, inserting needles and lines, changing ventilator settings, sedating and paralysing those whose numbers were wrong, more than once I did so with gritted teeth. Many of my patients had not arrived in ICU after a sudden unexpected event like a stabbing or a car accident, but as the result of chronic disease and advanced age. More than once I asked myself whether I was saving lives, or prolonging death.

I am sure my unit is no different to any other. I am also aware that I rarely see the results of good outcomes. Some patients do make near-miraculous recoveries. Patients with severe head injuries leave the unit alive and breathing but unable to speak or walk – I do not see them after months of rehab when they are leading happy, productive lives. I also know that many of the senior physicians are expert is discussing limits of care, realistic prognoses and withdrawal of invasive treatment. But these conversations happen too late. Too many patients with chronic disease arrive in ICU without ever having considered what they would want if they became severely unwell. Too few people understand what ICU is, and what can and cannot be achieved by expensive machines. Too few people express their wishes in advance, and so the default is always to treat, treat, treat, and when there is no hope left, treat some more. A quote from Atul Gawande’s book from an ICU physician sadly rang true when she complained she was running “a warehouse for the dying.”

In this context it was with great interest that I read a number of studies into ‘moral distress’ suffered by ICU staff. Moral distress is described as the angst of feeling trapped between “what people think they ought to do, and what they’re compelled to do.” Moral distress is studied to a greater degree in nurses, and is perhaps more common in nurses than doctors, due to perceived powerlessness in the hierarchy. It is recognised that moral distress is a complex phenomena, dependant not only on an individual’s beliefs, but also the context in which he or she practices and the support structures that exist. A number of factors are contributory, including end-of-life controversies such as inconsistent care plans and families demanding that aggressive treatments are initiated or continued when all hope for recovery is gone.  Perceptions of futile interventions were highly correlated with moral distress, and increased with duration of experience in ICU.  Reading these studies was reassuring, as others experience the same phenomena as I have been, and also concerning, that such distress is relatively common. Most studies suggest processes or interventions to ensure staff can voice their concerns and feelings, in order to reduce distress. This certainly happens on an informal basis on my unit, where colleagues are open, honest and supportive, and on a formal basis during morbidity and mortality meetings (although it now strikes me that only doctors are present at these meetings). However, we do not have Schwartz rounds, or an equivalent and I wonder what effect they would have when the fundamental problem, a lack of advance care planning, still exists.

death_everyone

Of course it is difficult and upsetting to talk about death. Death itself is upsetting. But we are all heading there, and not talking about it is damaging us all. Doctors need to better equip themselves for talking to their patients about what happens at the end, and what their priorities are. And patients need to feel more empowered to make their wishes known. I have met patients who want every possible invasive intervention until the second they die. I may disagree with their choice personally, but would fully support it as a professional. But I have met many more who, given the choice, have clear ideas on what they do and don’t want and where, for them, dignity and quality of life become more important than more time. I am sure a significant number of patients who have died on my ICU in the last two months would have chosen a different death.

I have four months left in ICU and a lot more to learn about ventilation modes, renal replacement therapy, and inotropes. But more importantly I have a lot more to learn about death, decision making and dealing with my own moral distress.

How to die: CPR and the concept of futility

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 beThe "Father of Modern Medicine" 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