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Palliative care in low-resource settings
Discussion with experts on palliative care in low-resource settings.
Welcome, everybody, to this session about palliative care in low and middle income countries, and particularly palliative care for respiratory conditions and chronic respiratory conditions.
So palliative care is defined as an approach to try to improve the quality of life of people with incurable illness, and also the quality of life for their families as well. As we all know, people with chronic respiratory conditions like COPD often live for many years with difficult symptoms in fear, very socially isolated– in fact, even socially invisible– with huge burdens on their families and sort of crisis admissions where things suddenly unravel. And what we’re aiming to do is support people to live as well as possible, and to feel comfortable.
And as we have been saying, this approach was initially developed for people with cancer, but it’s increasingly recognised that the needs of people with chronic conditions is just as great, if not greater. And it’s really inequitable that this focus on quality of life is happening for people with cancer and yet not people with other chronic conditions.
Our people believe that palliative care needs only goes to the patients who have cancer, not breathlessness or COPD. So the term palliative care or terminal care or end-of-life care, that is not much accepted by our patients.
Essentially, in a short answer, is as early as possible. So what we’re doing to try to optimise people’s quality of life is to support them to have as good symptom control as possible. So managing breathlessness, anxiety, fatigue, all of these things. This is really such an important point, if it’s not something at the end of life. It’s something that can happen in parallel with active disease-modifying treatment. Right from near the beginning of diagnosis, there is a stigma around palliative care, thinking that once you’re needing palliative care, then surely you must be very near the end of life. But why are we not thinking about quality of life at the same time as quantity of life?
So this type of proactive parallel management is a really important idea.
So the starting point does always have to be making sure that the underlying condition is well-managed. There’s no point diving in with symptom-focused approaches if you’re not managing the underlying problem. Somebody may, for example, have an infection that needs treatment with antibiotics. So that has to be the starting point.
It’s largely non-drug treatments that are effective for breathlessness, rather than drug treatments. We really need to be careful and not use morphine other than with people who have tried non-drug treatments fully and have the most severe breathlessness and are probably very near the end of life. And the evidence base is very mixed. And in fact, one recent very rigorous study actually showed no benefit for morphine at all. Oxygen, as well. Oxygen’s very good at increasing the oxygen levels in the blood. But there isn’t a good evidence from research that it reduces the feelings of breathlessness.
In our country, general belief among health professionals, as well as to the patients, is that morphine is for the patients who have been suffering from cancer at their end of life, but oxygen it has a placebo effect, a strong placebo effect.
I’m still not sure about this, and I think it might be that it’s beneficial in some patients, and perhaps those in a very– and you must remember that in our LMIC countries, all this, we are getting the patients in the very late stages. Diagnosis coming late, they do not get– pulmonary rehab is not very strong in our country. So the challenge we have on our hands is to try to bring in non-drug approaches earlier, because we do know those are effective, and then to have the skill to be able to choose the few people who might benefit from morphine and oxygen.
The non-drug treatments cluster into three main areas. Some of them are about being active and moving. Others are about how one thinks and keeping relaxed, like meditation, mindfulness. And then the third group is actually about the way you breathe. So breathing techniques. If I could explain the rationale behind these approaches, essentially, when people are feeling breathless it leads to feelings and behaviours which are completely natural and normal, but can inadvertently feed back to actually make the breathing worse than it need be for the level of the underlying disease. So people can, understandably, become very distressed and fearful by– particularly when their breathlessness is bad. But that fear actually changes the feeling of breathlessness and makes it even worse.
And also, it’s so natural when we’re breathless to not want to move around so much because, of course, the moving is what’s making the breathing worse. But if you move around less, you become less fit. And then the fall in fitness actually makes the breathing worse. So these vicious cycles can go round and round and make things spiral out of control. What these non-drug approaches do that we’ve been talking about is just gently break those vicious cycles. And, in fact, if you break a vicious cycle, you can see that it can lead to a lot of good, and thinking of approaches which don’t require a lot of resources and time. You may not change people’s lungs or heart.
But you can change the way they’re thinking about their breathing and the way they’re living their lives. I agree with that. And it sounds really good that there are measures that can be done, and that these measures sound to be low resource. But in a sense, although it sounds like it’s low resource because it’s educational, sometimes the delivery of such educational interventions require high resource. And pursed lip breathing is very, very important. [Demonstration]
There are some verses which people bind in a small metal, and they’re putting this in the arm or anywhere. These are religious and have a placebo effect. Most of the religions have some form of chanting or singing, so it would be great to have something that they will find solace, as well as that would improve their breathing pattern.
This is a very challenging area. Many people don’t recognise that advanced respiratory conditions and other chronic conditions can be life-limiting and reduce how long you live, as well as your quality of life. And many people find it understandably difficult to embark on conversations about living and dying with conditions such as COPD. And a challenge– prognosis is very hard to tell, even when people have far advanced disease. People can still live for many years with their condition. Something which we find can be very helpful in response to those challenges is something called parallel planning.
Essentially, you try to have conversations that are as early as possible, where you– perhaps after an admission to hospital or where something has happened that’s made people take stock and think, oh, goodness, what’s going on here, you have a conversation. Which, if I could summarise it, it’s saying we’re very much hoping things will go well, but some people find it helpful to think about the what ifs. You know, what if things don’t go as well as we hope? These conversations are often a process rather than an event. It is a difficult conversation to have. We have a group of champions who are spearheading hospice and palliative care treatment.
So we are trying to change the thinking, and training people on how to hold these type of conversations. We send a message to the person on the basis of the level of understanding. That is a very important part of real life practise. I don’t think that’s make them panic. It gradually includes even two or three settings, like tell them the diagnosis and prognosis, but never in one setting.
What we’re really talking about here is trying to give people a sense of control. So the disease will– particularly in advanced disease, that may not be fully controllable and people feel out of control in their own lives. By giving people that sense of control, you can also avoid crises.
Approaches to palliative and end of life care vary across different countries. Often services are less developed in low-resource settings. In this video, we hear from clinicians about different approaches in three different healthcare settings.
The latest study on the global burden of disease in The Lancet with data from 2019 shows that 62% of COPD and lung cancer are in low- and middle-income countries. The causes of COPD and lung cancer in terms of tobacco dependence and air pollution – particularly from indoor biomass – are less controlled in low and middle-income countries. They tend to be better controlled in high-income countries that have better tobacco control policies and tobacco dependence is declining.
Given that the biggest burden of respiratory disease is in low and middle-income countries, it is appropriate to investigate how best to deliver palliative care in these settings.
This discussion was conceived and facilitated by Siân Williams, CEO, International Primary Care Respiratory Group (IPCRG) and part of the teaching team. The discussion involved:
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Dr Anna Spathis, Palliative Care Consultant, Cambridge, UK
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Dr GM Monsur Habib, Respiratory Physician, Dhaka, Bangladesh
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Su May Liew, Primary Care Doctor and Professor in Primary Care Medicine, Kuala Lumpar, Malaysia
This article is from the online course:
Chronic Respiratory Diseases (CRD) in Primary Care Settings
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Chronic Respiratory Diseases (CRD) in Primary Care Settings
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