Putting the Heart into Palliative Care

In the last of our special series of guest blogs for Hospice Care Week, GP Richard Lehman considers palliative care for people with heart failure and the need for good care based on the patient’s goals at the end of life, whatever their mode of dying.

Figure showing survival rates

Stewart S, MacIntyre K, Hole DJ, Capewell S, McMurray JJ More “malignant” than cancer? Five-year survival following a first admission with heart failure. Eur J Heart Fail 2001;3:315-22

Looking through the Palliative Care section of the Cochrane Library, you will find a great wealth of reviews, from the very general to the very specific. Almost all of them relate to dying from cancer. Most people, however, die from conditions other than cancer; and conversely most people with cancer do not die from it. The average age of patients in acute medical hospital wards is now 80 or over, and the commonest cause for admission is a syndrome called heart failure, which can be quite as distressing as having widespread cancer, and just as lethal. But most people with heart failure do not receive any form of palliative care, and if you look up “heart failure” in the Cochrane Library you won’t find any reference to it paired up with “palliative” in the titles of the reviews.

I became acutely aware of this over twenty years ago, when my father was dying from heart failure. I was really anxious to keep him away from hospital, where he would be frightened and disoriented. My mother looked after him well at home, but she began to look ill herself. Just as my father entered his last weeks, she was diagnosed with advanced ovarian cancer. In the case of my father, we managed his dying at home as best we could, but when my mother went through her final months, we had access to first class palliative care. She died peacefully in our local hospice, which had only just opened.

Must heart failure mean hospital?

Mieczysław and Sophie Lehman

Mieczysław and Sophie Lehman

Up to that point in my career as a general practitioner I had been keenly interested in palliative care for cancer, but now I became keenly interested in palliative care for heart failure, and in particular in why it seemed not to exist. This was in the early 1990s, a time when the syndrome of heart failure was suddenly becoming a fashionable topic in cardiology, and GPs were being told that that they were overdiagnosing the condition and undertreating it. This accusation did not make sense to me then and still does not. The “heart failure” of cardiologists usually refers to reduced left ventricular function as seen in male patients in their early 60s who were enrolled in big randomized trials from the early 1980s to the present time. Thanks to these trials we know how to treat them and help them to live longer. The “heart failure” of general practice is quite different. Here the average age is 78 (the age of my father when he died) and the gender ratio is equal. Half of these patients do not have damaged left ventricles but simply stiff old hearts, and we do not know how to extend their lives usefully or avoid them coming into hospital every few weeks or months.

The fact is that for most of these people, “heart failure” is their destined mode of dying, and they and their loved ones know it, and feel it acutely whenever they experience an episode of “decompensation”. Almost all such patients have several other medical conditions, related or unrelated to their heart. When they start fighting for breath and feeling the nearness of death, they often have no alternative to calling for an ambulance to take them into hospital. As a result, most people with heart failure either die in hospital or leave a few days later in a weakened state. Many are readmitted within the next month with the same diagnosis or a different one.

A place of safety at the end of life

I can’t help feeling that this is a massive problem that we need to address with new models of care. Elements of care have been explored, usually with a view to reducing readmission to hospital, but interventions such as telemonitoring and the provision of specialist community nurses have had little overall effect. I think we need to begin with the patient experience and acknowledge the need that these people who are near the end of life have for a place of safety when they become very ill. An acute hospital ward may be a poor destination for most of them. Eight years ago, I put together the first book on heart failure and palliative care with Miriam Johnson. Now I think it’s time for others to take this subject up and look more widely. What, I would ask, is the difference between “palliative care” and simply good care based on the patient’s goals for the remainder of their life and the time when they die?

Top photo shows a hospice patient with a pet therapy dog. Credit: John L Hendricks, www.nwitimes.com 

Links:

Inglis SC, Clark RA, McAlister FA, Ball J, Lewinter C, Cullington D, Stewart S, Cleland JGF. Structured telephone support or telemonitoring programmes for patients with chronic heart failure. Cochrane Database of Systematic Reviews 2010, Issue 8. Art. No.: CD007228. DOI: 10.1002/14651858.CD007228.pub2.

Cochrane summary http://summaries.cochrane.org/CD007228/VASC_structured-telephone-support-and-telemonitoring-in-the-management-of-patients-with-chronic-heart-failure

Takeda A, Taylor SJC, Taylor RS, Khan F, Krum H, Underwood M. Clinical service organisation for heart failure. Cochrane Database of Systematic Reviews 2012, Issue 9. Art. No.: CD002752. DOI: 10.1002/14651858.CD002752.pub3.

Cochrane Summary http://summaries.cochrane.org/CD002752/VASC_clinical-service-organisation-following-hospital-discharge-for-adults-with-chronic-heart-failure

Chapman S. New evidence on how to help people with chronic heart failure to stay out of hospital. [20 October 2012]. Evidentlycochrane.net. Web. http://www.evidentlycochrane.net/new-evidence-on-how-to-help-people-with-chronic-heart-failure-stay-out-of-hospital/

Heart Failure and Palliative Care: a team approach   Radcliffe Publishing 2006  ed. Miriam Johnson and Richard Lehman

Stewart S, MacIntyre K, Hole DJ, Capewell S, McMurray JJ  More “malignant” than cancer? Five-year survival following a first admission with heart failure. Eur J Heart Fail 2001;3:315-22

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Richard Lehman

About Richard Lehman

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Richard Lehman, MA, BM, BCh, MRCGP, was a full-time general practitioner in Banbury for 32 years. For the last 17 years he has also written a weekly summary of the principal medical journals which is posted on the BMJ website. After retirement from UK general practice in 2010 he has worked on studies of the patient experience, and has spent a year at Yale working with the Yale University Open Data Access (YODA) project and remains a consultant to the group. His main interest in ways to develop better informed dialogue with patients and he is on the steering committees of the NICE shared decision making initiative and Academy of Medical Royal Colleges Choosing Wisely group.He is Senior Advisory Fellow in General Practice at Cochrane UK.

3 Comments on this post

  1. Kit Byatt

    As a geriatrician, I completely concur with this blog. In addition, I suggest that the focus over recent years on ‘CKD’ and ‘AKI’ have had an adverse effect insofar as this has resulted in an already established reluctance to prescribe appropriate doses of diuretic being ramped up even further.
    The things that matter to most patients with heart failure (especially when end stage) are the ability to breathe, and/or freedom from uncomfortable peripheral oedema. The former is often not helped much by oxygen (being the result of direct stimulation of pulmonary J receptors by interstitial oedema) and the latter usually needs relatively much higher doses of diuretics, specifically because the kidney function is worse in these patients (especially if they are older) and thus less responsive to their action.
    The net result is that junior (and, indeed, many senior) doctors fret about urea, creatinine, and potassium – none of which any of my patients has complained of. In addition they introduce and ‘uptitrate’ NICE-compliant beta blockers and ACE inhibitors, but end up omitting to offer opioids for acute or nocturnal dyspnoea, and also not ramping up the diuretic dose (which often works perfectly well orally, given an adequate amount).

    Sadly, we appear to have become so fixated on applying the technical evidence for treating the chronic stable disease well, that we have overlooked Osler’s dictum that a good doctor treats the disease, whereas a great doctor treats the patient with the disease.

    Kit Byatt / Reply
    • Sarah Chapman

      Hi Kit, thanks for your comment. Here’s a reply from Richard Lehman:
      Thanks very much Kit. It’s good to have support from a working clinician, but sad to have confirmation that there has been so little progress in the 20 years we have been pressing for better care of end-stage heart failure, both in and out of hospitals.
      Even in chronic stable systolic heart failure without comorbidity (a rare beast), the evidence for uptitrating ACE inhibitors and beta-blockers is minimal. For people approaching or past 80, the classic “titrate until they drop” policy strikes me as totally wrong on every count. And of course half of those with heart failure at that age do not have systolic dysfunction anyway, but almost all of them have major comorbidities.
      Firstly: I wonder if we might collaborate on a piece on what good care of end-stage HF would look like? I have been meaning to do this for some time, with the provisional title of “Wanted for Heart Failure: a place of safety”.
      Secondly I would suggest that we need to set up a Cochrane group to examine the evidence for dose titration in the major classes of HF therapy – this has not been done yet.
      Thirdly I have a talk on heartless care for HF, which I’m happy to give anywhere I’m invited.

      Sarah Chapman / (in reply to Kit Byatt) Reply
      • Kit Byatt

        Sorry – please forgive my tardy response; I’ve only just seen your reply!
        a) would love to!
        b) agree (esp in treating [frail] older people)
        c) I think you have my email address, Sarah, & I’m happy for you to pass it on to Richard L.

        Kit Byatt / (in reply to Sarah Chapman) Reply

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