(For NIHR Palliative Care Project – Queens University Belfast)
This special issue paper was written by Mr John Burden, our PPI Partner, following discussions on potential barriers to integration of palliative care in heart failure management during our last Stakeholder meeting in March 2022. These discussions sparked John’s interest in trying to understand connotations around the term ‘palliative care, and his own views of the term ‘heart failure’. We hope you enjoy this interesting conversational style piece that includes a little bit of history, and lots of food for thought!
“So difficult it is to show the various meanings and imperfections of words when we have nothing else but words to do it with.” John Locke
‘Palliative care’ and ‘heart failure’ are key terms that we use frequently despite the ongoing concerns raised by clinicians, patients and carers alike about their suitability, because of their negative connotations. On the other hand, they are well-established terms and have been used by clinicians for decades and much professional time and resource has been invested in them.
Is it time to re-examine the terms ‘palliative care’ and ‘heart failure’?
There is increasing evidence that a positive attitude amongst patients and carers enhances the chances of a good recovery and/or improves their quality of life. Therefore, the terminology used in healthcare should be carefully considered.
This article will examine the etymology of the terms palliative care and heart failure. I also share my perspective on the impact of these terms as a patient living with heart failure.
So, what is palliative care?
As a term, palliative care suffers from misperceptions among the general public and many clinicians that it is intimately associated with end-of-life care, often within the hospice movement and the further associations with cancer. This can result in, at least, initial resistance by patients and carers when offered palliative care by their medical team because they assume it implies that they are approaching the end of life.
Here are some current definitions:
From the NHS Website
‘End of life care includes palliative care. If you have an illness that cannot be cured, palliative care makes you as comfortable as possible, by managing your pain and other distressing symptoms. It also involves psychological, social, and spiritual support for you and your family or carers. This is called a holistic approach, because it deals with you as a “whole” person, not just your illness or symptoms.
Palliative care is not just for the end of life – you may receive palliative care earlier in your illness, while you are still receiving other therapies to treat your condition.’
From US National Institute of Aging
‘Palliative care is specialized medical care for people living with a serious illness, such as cancer or heart failure. Patients in palliative care may receive medical care for their symptoms, or palliative care, along with treatment intended to cure their serious illness. Palliative care is meant to enhance a person’s current care by focusing on quality of life for them and their family.’
From Marie Curie website
Palliative care offers physical, emotional and practical support to people with a terminal illness. It can be offered at any point after a terminal diagnosis.
If you are living with a terminal illness, you will usually have treatment and care which focuses on:
Managing any symptoms:
Offering emotional, spiritual and psychological support
Offering practical support, including things such as planning for the future or getting equipment
Giving you a good quality of life.
This type of holistic care, which looks after every part of you, is called palliative care. Palliative care aims to make sure you feel supported and comfortable, rather than cure the illness.
Palliative care is sometimes called ‘supportive care’.
The World Health Organization (WHO)
WHO describes palliative care as “an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial, and spiritual.” In the past, palliative care was a disease specific approach, but today the WHO takes a broader approach, that the principles of palliative care should be applied as early as possible to any chronic and ultimately fatal illness. Palliative care (who.int)
From getpalliative care.org
Palliative care is specialized medical care for people living with a serious illness. This type of care is focused on providing relief from the symptoms and stress of the illness. The goal is to improve quality of life for both the patient and the family.
Palliative care is provided by a specially trained team of doctors, nurses and other specialists who work together with a patient’s other doctors to provide an extra layer of support. Palliative care is based on the needs of the patient, not on the patient’s prognosis. It is appropriate at any age and at any stage in a serious illness, and it can be provided along with curative treatment.
Most of these definitions emphasise the need for holistic care, improving the quality of life and advocate the inclusion of palliative care from an early stage of a serious illness which is not necessarily confined to cancer, the disease most commonly associated with palliative care amongst the general public if not specialist clinicians. It’s also interesting to note that the Marie Curie website mentions ‘supportive care’ as an alternative term.
It was also interesting to note during my search on Google around ‘palliative care’ ‘People also search for’ end piece included the following search strings:
This also gives a rough indication of people’s misperceptions of ‘palliative care’ as a medical term meaning death, and as something that is inherently ‘bad’.
Getting to the root of the problem
While we are rarely conscious of the root or etymological derivations of words as we use them in speech and writing, they often carry a subconscious or unconscious meaning or association gathered up in the overtones and undertones of the word in its various contexts.
So, for ‘Palliative’, the online dictionaries, such as ‘Online Etymological Dictionary’ and ‘Wiktionary’ derive the word ultimately from Late Latin, ‘palliare’’ meaning ‘to cover with a cloak, conceal’ from Latin ‘pallium’, a cloak. The word found its way via Medieval Latin, palliativus’, ‘under cloak, covert’ and Middle French ‘palliatif’ directly into Middle English in the early C15 meaning “serving to mitigate or alleviate” (a wound, disease, etc.) and ‘serving to cover, concealing’.
Also, from ‘pallium’. ‘a cloak, coverlet, covering’ we ultimately get ‘pall’, originally ‘a rich purple robe or altar cloth’, often associated with Christians but by the mid C15th it had become a ‘cloth spread over a coffin’ (hence pallbearers) and by the mid C18th this had led to a figurative sense of ‘dark and gloomy’.
So while the medical definitions are often wider than solely end-of-life care, the associations and imagery related to the word ‘palliative’ are not particularly positive and I would suggest these are perceptions that tend to be uppermost in the minds of patients and carers when they are considering or faced with the possibility of ‘palliative care’.
A stated alternative to the term ‘Palliative Care’ is ‘Supportive Care’, although its use appears not to be widely established at present in the UK or elsewhere.
Here is a definition:
NIH National Care Institute
Supportive Care is given to improve the quality of life of people who have an illness or disease by preventing or treating, as early as possible, the symptoms of the disease and the side effects caused by treatment of the disease. Supportive care includes physical, psychological, social, and spiritual support for patients and their families. There are many types of supportive care. Examples include pain management, nutritional support, counselling, exercise, music therapy, meditation, and palliative care. Supportive care may be given with other treatments from the time of diagnosis until the end of life.
Late 14c., “to aid,” also “to hold up, prop up, put up with, tolerate,” from Old French suporter “to bear, endure, sustain, support” (14c.), from Latin supportare “convey, carry, bring up, bring forward,” from assimilated form of sub “up from under” + portare “to carry,” Supportive is the adjective made from the verb support.
The sense of this word is more positive than palliative in that ‘support’ is ‘bringing forward or up’, and is more enabling, and there is no sense of concealment or covering up.
This relatively recent American article discusses the similarities and differences between the use of the two terms:
What Is the Difference Between Supportive and Palliative Care? (extracts)
July 3, 2019, by Shelly S. Lo, MD, and Mary K. Buss, MD, MPH
What’s in a Name?
Some institutions and organizations now use the terms “supportive care” and “palliative care” interchangeably. The American Cancer Society states that “palliative care (or supportive care) is care that focuses on relieving symptoms caused by serious illnesses like cancer. It can be given at any point during a person’s illness to help them feel more comfortable.” Supportive care, as defined by the National Cancer Institute (NCI), is “care given to improve the quality of life of patients who have a serious or life-threatening disease. The goal of supportive care is to prevent or treat as early as possible the symptoms of a disease, side effects caused by treatment of a disease, and psychological, social, and spiritual problems related to a disease or its treatment. Also called comfort care, palliative care, and symptom management.”
Hence, both palliative care and supportive care are focused on patients, families, and preserving or improving quality of life. So, is there a difference? Although no one would object to “supportive care” interventions aimed at relieving cancer-related pain and distress, many patients, families, and providers hesitate to seek “palliative care” because they mistakenly fear it is akin to giving up on treatment. The persistent misperception—as much by health care professionals as by patients and families—that the term “palliative care” remains synonymous to “end-of-life care” represents a significant barrier to patients and families receiving much-needed services. Thus, some patients and providers may see the term “supportive care” as a less emotionally charged name for the same services.
The article goes on to state that researchers at the University of Texas found that the term ‘palliative care’ was more ‘distressing and reduced hope for patients and families’, and they preferred the name ‘supportive care’. Therefore, staff changed the name to ‘supportive care’ in 2007 and subsequently there was a 41% increase in consultations, meaning that many patients were being seen earlier in the course of their cancer.
Similar results were found by the University of Pittsburgh, with patients more likely to associate supportive care with ‘providing enhanced communication, information, and psychological, mental, and social support’. They were more likely to equate palliative care with care provided at the end of life.
Perhaps as the culture develops and changes, these terms might be used in conjunction with supportive care as a term covering the broader aspects of care from diagnosis and palliative care reserved for care at later stages of the progression of the disease whatever it may be.
The last term I want to consider is Heart Failure
The current definition from the NHS website describes heart failure as when:
”… the heart is unable to pump blood around the body properly. It usually occurs because the heart has become too weak or stiff. Heart failure does not mean your heart has stopped working. It just needs some support to help it work better. It can occur at any age but is most common in older people. Heart failure is a long-term condition that tends to get gradually worse over time. It cannot usually be cured, but the symptoms can often be controlled for many years.”
I wonder if there has been any research on the perceptions of the term amongst medical professionals, patients and carers? I would suggest that, when patients and carers think about heart failure, the image they get is of a complete or near complete breakdown in function perhaps akin to a cardiac arrest (but even here with access to modern medical facilities, the situation can be salvaged). The condition sounds terminal (like cancer, and erroneously so in both cases) and may well have been terminal a century ago when the term was first beginning to be used widely but when effective treatments had not been developed to any great extent.
But today this perception and the reality are very different.
Perhaps many patients and carers mostly think about Heart Failure in a mechanical way, as in Engine Failure. After all, the heart is understood to be our most important organ.
Here is a current definition from the ‘Lawinsider’
Means any failure of an engine’s electrical system, emission control module, fuel delivery system, or mechanical parts that necessitates the removal of the engine from service.
For most patients with Heart Failure, the heart cannot be taken out of service.
It’s also worth considering the Etymology of the word ‘fail’ or ‘failure’, So from the Online Etymological Dictionary:
c. 1200, “be unsuccessful in accomplishing a purpose;” also “cease to exist or to function, come to an end;” early 13c. as “fail in expectation or performance,” from Old French falir “be lacking, miss, not succeed; run out, come to an end; err, make a mistake; be dying; let down, disappoint” (11c., Modern French faillir), from Vulgar Latin *fallire, from Latin fallere “to trip, cause to fall.”
These definitions seem to be mostly final and negative, as though there is no remedial action that can be taken. But today, provided there is early intervention, a heart failure condition is treatable (up to and including heart transplants) if not normally reversible as yet, but could be in the future as research is ongoing around ‘mending damaged hearts’.
So, what are the alternatives? As heart failure has several causes, singly or in combination, e.g., MIs, AF, poor valve function, low LV extraction fraction, enlarged heart, high BP, etc., would it be best to focus on ‘heart function’, ‘dysfunction’ (e.g. LVSD – Left Ventricular Systolic Dysfunction) or ‘malfunction’ due to certain identifiable causes with particular symptoms?
I feel the issue around the use of the words ‘palliative’ and supportive’ (and maybe ‘heart failure’) may only ultimately be resolved, like all linguistic questions, by usage and identifying what works. So, any change, if it happens, is likely to be gradual and will occur within the medical and caring professions provided they listen to the perceptions of patients and carers.
John Burden Patient 5th May 2022