Last Beats of the Failing Heart — Two Views

–Milton Packer and Richard Lehman compare perspectives, Part 3

Editor’s note: This is the third installment of an ongoing discussion about heart failure (HF) between Milton PackerMD, who has been leading major heart failure clinical trials for decades, and Richard Lehman, MA, BM, BCh, MRCGP, a retired U.K. GP who writes a blog for the BMJ website. (Click here to read the first installment and the second installment of this series.)


In response to this series one reader on Twitter, a caretaker for an aging father, raised a difficult issue: “Biggest question is how/when end stage determined & care shifts: cruel or kind?” What are your thoughts about this?

Milton Packer:

“I think of myself first as a human being, second as a philosopher amazed and entertained by the universe, third as a physician, and last as a clinical trialist. So from my perspective, the point raised in this tweet (so eloquently articulated) confuses me. Do we actually live in a binary world where we suddenly make a decision to move from intensive care to supportive care? What can we possibly mean when we use the term “end-stage”? Does comprehensive and compassionate care ever really shift at a specific point in time? Let me provide two real examples from my own experience.

A 63-year-old man is brought to me by his family. He smoked cigarettes and abused alcohol all of this life and avoided seeking medical care for his hypertension. He suffered a disabling stroke a few years before, has substantial impairment of kidney function, is not ambulatory and is horrified by his life. Most of the time, he refuses to take the medicines that are prescribed for him. His family has just been told that he has heart failure with a reduced ejection fraction, and wants me to make him better. I tell them that his heart failure is the least of his difficulties, and that whatever I do, I will not make a real difference, and I could make things worse. They leave disappointed because they were told (before their visit) that I could work miracles.

A 79-year-old woman comes to see me and is accompanied by her daughter. She has suffered several heart attacks in the past few years, and now, cannot function because she has disabling shortness of breath that overwhelms her after a few steps. She has seen many physicians before me who have told her that her heart is on its last legs. Yet, upon reviewing her medications, it is clear that she has been receiving terribly suboptimal care. For some reason, she takes only one of the many medications she needs, but at the wrong dose, and many critical elements of treatment are missing. She has been told by her physicians that nothing else can be done. She tells me that she really wants to get better; she wants to see her grandchildren grow up and she loves the outdoors. I tell her that there is much that we can do, but it will take time and we need her commitment. Nine months later, after implementing many changes in her medical regimen, she has returned to living her normal life and is delighted to go on long walks in a beautiful (but somewhat hilly) region near her home. She asks me how long this improvement can continue. I tell her I want to be invited to her 90th birthday party.

Which of these patients should be given the label of “end-stage disease”? Given these examples, is this still a question that needs to be answered? My response is a simple one: if I can make a meaningful difference in a person’s quality or quantity of life, I will not hesitate to do it. It is not more complicated than that.”

Richard Lehman:

This question is raised by the carer of a father with longstanding heart failure, and I’m going to address it as someone who has been through the same thing with his own father, albeit 25 years ago. I do think that the “care shift” problem is still a deep issue for many who want to see their loved ones get the best treatment but who are often faced with the increasing nearness of death. Treatments that previously helped no longer do so. In fact the burden of treatment can be additional to the burden of symptoms, as each day brings added premonitions of death, with no certainty about when or how it might happen.

Since my father’s time, thanks to the immense work of Milton and other leading trialists, we have many more options to prolong life in patients with systolic heart failure. In the first part of our conversation, Milton said that “The key to communicating with a patient with chronic heart failure is to tell them that they have a really serious but manageable disease and that we can relieve suffering and prolong life. But you also need to tell them that treating heart failure successfully is really complicated.” I agree. In fact given the complexity involved, I believe that if we can crack the art of sharing decisions in heart failure, we can do it for just about anything.

But for now I’ll return to the case of the carer’s father who has advanced HF and has been on treatment for years. Twelve years ago I helped to collect a database of video narratives which included such people and those looking after them at home. Social isolation, depression, inability to do anything enjoyable, constant weakness, uncertainty are just some of the themes. A kind and knowledgeable cardiologist is a wonderful asset to such patients but as they get closer to death, they need more help than any individual can provide alone.

For a long time I bought into the “hand over” model of thinking and thought of mechanistic ways – for example measuring BNP – to persuade cardiologists that the time had come to hand over to palliative care. I don’t think that way any more. Although in the past I’ve been a carer for my father, a GP and an out-of-hours palliative care doctor in my career, I think I need to get humble and find out more about the real needs of patients with longstanding heart failure and the carers and relatives who have shared their lives (day and night) for years. Fortunately a group of us (the rest much younger than me) have just got funding to determine research priorities for advanced heart failure directly by bringing together patients, carers and front-line clinicians. There is a terrific UK organization which was set up to do this across any and all medical conditions, called the James Lind Alliance.

I see the eventual solution here in a radically better system of training in communication and collaboration for all health professionals, and the development of systems of integrated care which are truly patient-centered. I would like to see a blurring of boundaries between specialist and end-of-life care. This may sound vague and aspirational but I make no apologies for that. To me this sharing of knowledge, skills and values is the only way in which the great store of evidence, which Milton and others have worked their lives to accumulate, can most humanely and effectively be applied to the care of individuals reaching the end of their journey.


  1. dearieme says

    “individuals reaching the end of their journey”: oh for heaven’s sake. Does he mean “near death”?

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