Tag Archives: family

The LCP is dead: long live the LCP

Last weekend I was on call in hospital and cared for George,* a patient who was entering the last stages of life. George was no longer conscious so the Consultant and I spoke to his family, discussing which interventions to continue and which we felt were no longer benefiting him. Later in the day I reviewed George and found that he had developed respiratory secretions and was in some distress. I stopped his intravenous fluids, prescribed medications to treat his symptoms and reached for the Liverpool Care Pathway. And then I stopped. In the context of the recent press coverage and the LCP review what should I do?

hold hands guardian image

Image from The Guardian

More Care, Less Pathway

Last week the Independent Review of the LCP was published, entitled “more care, less pathway.” It has been greatly anticipated by those inside and outside healthcare, as the LCP has become a focus of polarised views on both the concept of the LCP itself, but more often it’s alleged misuse. The LCP is an approach to care including a complex set of interventions, developed to replicate within hospitals  the standard of care for the dying found in many hospices. But in recent months the LCP has been called “The Death Pathway” amidst claims that is has been used to hasten death and free up beds. News of financial incentives for hospitals to ensure best practice standards were met were misrepresented in the press as cash bribes for death pathway. 

LCP review report cover

During the recent press attacks on the LCP, many doctors and nurses spoke out in support of it, highlighting the fact that this is how they would wish to be treated at the end of life. Those who witness death are often more accepting of it’s inevitability and form strong views on what they want for their own last days and those of their loved ones. I publicly defended the LCP and signed the letter myself, and so I was initially disappointed that the report calls for the phasing out of the pathway. It seems counterintuitive that poor implementation and poor communication could lead to wholesale rejection of a set of standards that I have seen work so well in practice.

What’s in a name?

But on reading the report in full, I have to accept the thoughtful reflections of Baroness Neuberger. The most important people at the centre of the recent discussions are dying people and their families. For many of them the LCP is now too badly tarnished to be of comfort, and the term “pathway” is unhelpful in this context. We must listen to the evidence in the report, and be willing to find ways to move forward, striving for ever better care of the dying.

The report alludes to the fact that guidelines and standardised care plans are not worth the paper they are written on if they are not implemented professionally, expertly and compassionately. I couldn’t agree more. But I worry that without the LCP, staff who are inexperienced and under-confident in recognising and treating end of life symptoms will be left without clear guidance, and patients will suffer. We must not let that happen.

The report calls for a number of changes, at an individual, local and national level: better communication between healthcare professionals and patients and their families; specific clarification of the benefit and risks of artificial hydration and nutrition when someone is dying; education and training of all staff in acute hospitals; greater accountability; clearer documentation about patients’ advance care plans, and enhanced record sharing between primary and secondary care; and “a national conversation about dying.”  Until we are able to discuss death openly as a society, with all it’s associated pain and uncertainty, those of us trying to support patients and families at this crucial time will continue to struggle to provide the best care. In the end this is not about protocols, it is about people.

The LCP is dead: long live the LCP

So, what did I do for George during his last hours of life last weekend? I did not complete the paperwork that would have formally put him on the LCP, but the decisions I made were identical to those I would have taken a month ago. The LCP was always designed to be a ‘personalised care plan’: it highlighted the need to communicate well with patients and relatives; and it provided guidance, not rules, on the use of artificial hydration and nutrition. I did what I always do: whatever I could to ensure that my patient died in peace, surrounded by his family. Easing his symptoms was perhaps the most important thing I did all weekend. 

“Good care for the dying is as important as
good care at any other time of life.”

So while I lament the passing of the LCP, I will be forever grateful to those who created it; those who made high quality care of the dying in our hospitals a priority. I will continue to do what I can for any patients in my care who are dying. I will listen to their priorities, involve them and their families in crucial decisions, use all my professional knowledge and skill to ease their symptoms and be honest and compassionate.

I encourage you all to think about your priorities for your final days, and to contribute to a long overdue “national conversation about dying.” We must all play our part in making living and dying well the norm.

* name changed to maintain confidentiality

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