I don’t want to see the hospice team. It’s about dying, isn’t it?
I can’t tell you how many times I’ve heard this from hospital patients.
When people are referred to me, a palliative care consultant, you can often see the desperation on his face.
Because for most people, the term is full of grim forebodings, and implies that death is only days, maybe even hours, away.
While, yes, we also see people in the last days of life, we also see many more very early in their health care journey.
the World Health Organization describes palliative care as ‘an approach that improves the quality of life for patients (adults and children) and their families facing problems associated with life-threatening illnesses’.
This is done by preventing and alleviating suffering through early identification, correct assessment and treatment of pain and other problems, whether physical, psychosocial or spiritual. And it can start at any time during a person’s care, even from the beginning of the illness onwards.
So being painted as God’s waiting room is grossly unfair.
Especially when almost all doctors and nurses, whether generalists or specialists, deal with dying patients. Why doesn’t anyone react the same way when referred to a pulmonologist, hematologist, or oncologist?
However, the stigma around the term is so great that for decades I have heard the debate about whether we should get rid of it altogether, replace it with something softer, such as ‘symptomatic care’, ‘palliative care’ or even ‘team care’. holistic’?
I couldn’t disagree more.
When I first came to the UK from Germany in the 1990s, I had to ask someone what Tony Blair he meant, when on one occasion he spoke of someone ‘passing away’.
An ever pragmatic Scotsman explained to me that for some the words ‘she died’ are too harsh and have gradually been replaced by softer terms like pass, pass or die. I was a bit taken aback. In GermanyI had grown up with a language that is very direct.
All of this means that realistic terms like palliative care or “end-of-life care” are increasingly being euphemized into something that sounds a bit nicer.
We softened the blow, perhaps suggesting that the ‘symptom management nurse’ or ‘pain team’ could come into the room for a chat.
The problem with this approach has been that people I have met with very advanced disease have sometimes been unaware that they may have limited time left.
Of these, many were shocked when they discovered the full extent of their illness.
But it’s not surprising when there have been cases where I’ve seen a patient who, at the mention of the word palliative care, said, “Oh no, thank you doctor, I don’t need it yet.” I have even had the door slammed in my face.
Palliative care does not have to be a dirty word. Nor the words death and dying
There is such a misunderstanding of what we do.
One of my patients a few years ago turned around and said, ‘I always thought there was only one way to get discharged from hospice,’ while pointing to the sky. Then he saluted, turned around and closed the door. For all I know he is still alive and may be reading this.
The idea of needing this kind of help may initially seem like bad news in and of itself, especially when it’s unexpected. Despite ample evidence of its benefits, palliative care has had a bumpy road and has sometimes been seen as a kernel plugin National Health Service watch out.
Even where its availability has been made available, it has been reported in many countries to be underused or initiated late in the course of life-threatening diseases such as cancer.
This has meant that symptoms such as pain, breathlessness, nausea and other symptoms that palliative care can usually reverse fairly quickly, may not have been treated.
It means that patients have been less able to start or continue other treatments (such as immunotherapy or radiation therapy), which may help control their disease for a little longer.
That is why I am relieved that the government has recently accepted a house of lords amendment requiring, for the first time, every part of the NHS in England to provide specialist palliative care.
This means a duty to ensure that specialist services are available and able to provide advice, including general practitioners, nurses and allied health professionals, at all times.
The amendment has finally ensured that palliative care is a core part of NHS services, and is no longer supported simply by charity, as has been the case since it began as a specialty in the 1980s.
But I am concerned about its success when so many people are uncomfortable with the word palliative.
Still, I am far from convinced that a new term will solve any of the deep-seated perceptions, misconceptions, and problems.
It would not address the underlying problem itself, which is our social difficulty in accepting that time is limited and an overvalued idea of over-promoting positivity, at the expense of realistic forward planning.
Palliative care does not have to be a dirty word. Nor the words death and die. If we accept it as a proactive part of care that solves problems, that approaches the future realistically and pragmatically, we will all be better off in our later years.
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