Desktop Helper 3 - Supplementary Information 4 - Advance care – example of different contexts: Bangladesh and Malaysia - transcript

Anna you’re a palliative care Consultant, with a special interest in breathlessness – so 

When we talk about palliative care for people with chronic respiratory diseases like COPD, what do we mean?

Sian

Palliative care is defined as an approach to try to improve the quality of life of people with uncurable illness and also the quality of life for their families. As we know many people with chronic respiratory disease such as COPD often live for many years with difficult symptoms, in fear, very socially isolated,  even social invisible  with a huge burdens on their families and crisis admissions, where things suddenly unravel. What we are aiming to do it is support people to live as well as possible and to feel comfortable. This approach was initially developed for people with cancer, but increasingly it is being recognise that the needs for people with chronic conditions is just as great, if not greater. It’s really inequitable that this focus on quality of life is happening for people with cancer but not for people with other chronic conditions.  

Anna

Is that a fair reflection of your experience  in Bangladesh?

Sian

Our patients believe that palliative care only goes to the patients who have cancer, not breathlessness or COPD. So ‘palliative care’, ‘terminal care’ or ‘end of life care’ is not accepted by our patients. However the patients at the end of their life need support, they need to improve the quality of their life and the quality of life for their family. We are trying to do it, but not by the name of ‘end of life care’.   They will not accept this, when I mention terminal care the patient will think I don’t need your support

Monsur

What is the experience in Malaysia?

Sian

The same themes apply very well in Malaysia. I saw how socially isolated people were. I heard one man describing how he lived in his room for the past five years -  he could remember the date when he had left his bed for the last time. I felt quite upset we neglected this population.

Su May

Another word Anna used is ‘invisible’,  you don’t know the neglect is there because you can’t see it or not talked about.

Sian

Can we talk a little bit more, about the journey for COPD?

When does palliative care start?

Sian

Essentially in a short answer, as early as possible. So what we are 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 and really good and careful communication to support people psychologically and their families as well. It’s a proactive approach and to start as early as possible and the key thing is, and  this such an important point - 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 . As Monsur was saying there is a stigma around palliative care that once you need it you’re near the end of life . But why are we not thinking about quality of life at the same time as quantity of life? This kind of parallel, proactive management is a really important idea.

Anna

Is this a helpful idea for you in Bangladesh and Malaysia?

Sian

In practical life patients have some coping strategies. It depends on the patient. Generally I find I have two types of patients. One group are problem focussed, we should start their care as early as possible,  they remove their problem to the doctor, they want me to solve their problem immediately -  they don’t want to get medicine for a long time. The other group are emotion focussed …. we can start to make a plan of management at the beginning. But those who are problem focussed, we can’t start a management plan for them. Some patients think it is their problem, which they have to solve and the other group think it is the responsibility of the doctor and  I have to solve it they think it is the problem of the doctor.

Monsur

One of the doctor participants in our study told me that when he was a respiratory physician he felt that this group of patients who were always coming back to the ward were a nuisance. He felt he couldn’t do anything for them. They just come in and they go into this spiral, they come in - they get over their acute exacerbation – we send them out - then they come in again.  And it got worse and worse and worse and he didn’t like having this situation and then they started having this palliative care service in the hospital and he saw that something could be done for these patients and he said then he realised that he could do something and that made him take up palliative care medicine. He felt he could really change these lives. He remembered one patient when he was talking to their respiratory physician and the respiratory physician had switched off the opioids for the patients and he was so angry because the respiratory physician said we don’t need this for this patient. So it’s not just the patient that needs to be aware, it’s the communities, but also the doctors need to be made aware of all these things because they have to be the ones to guide the patients. If the doctors are not there I doubt the patients are going to be brought along.  

Su May

That leads us on very nicely to talk about treatments

What are the palliative care interventions for breathlessness that are evidence based and possible in low resource settings?

Sian

The starting point always has to be that the underlying condition is well managed. There’s no point in diving in with symptom-focussed services if you’re not managing the underlying problem, Someone may have an infection that needs to be treatment with antibiotics. That has to be the starting point. Beyond that once you’re thinking about a symptom-focussed approach, it’s largely non-drug-related treatments which are available, rather than drug treatments.  

Anna

There is a small amount of evidence for the use of morphine for  breathlessness. But when you look carefully at the evidence base, overall we need to be very careful and not use morphine, other than with people who have tried non drug treatment fully and have the most severe breathlessness and are very near the end of life. Even then generally morphine should not be used for people with non-malignant conditions. The evidence base is very mixed and one recent and very rigorous study showed no benefit at all.

Oxygen is very good at increasing the oxygen levels in the blood (to treat hypoxia), but there isn’t any evidence that it reduces the feelings of breathlessness.

So that happily leaves us with non-drug treatments and this is where the best evidence is. The types of things are really quite simple such as lifestyle-types of approaches. So, keeping moving, being gently active, taking part in yoga, meditation, mindfulness, relaxation techniques, simple breathing techniques, cool air on the face. All of these have some evidence to support them.

And other approaches which don’t have an evidence bases,  but form a large body of experience such as singing.

Anna

Are these messages about drug and non-drug treatments understood by colleagues in Bangladesh and Malaysia ?

Sian

Yes as Anna has suggested the use of morphine in treating breathlessness, the evidence is not strong.   In our country health professionals and patients believe morphine is mainly used in the treatment of cancer and at the end of life, Also morphine may cause an allergic reaction and may induce breathlessness. So in our country morphine in not being used for treatment of breathlessness.

Oxygen – I agree there may be no evidence but it can have a placebo effect. I have seen in my practice those patients who have oxygen in their room. He’s not taking oxygen, but he looks at that cylinder and he feels better. It has a strong placebo effect.

We help patients who are very breathless, and at the end of their life,  by showing them we are trying to do everything for them and that makes them comfortable at their dying time.

Monsur

I was really interested in this point and went to read up about this. One of the problems brought up by our palliative care doctors was the respiratory  physicians are really against the use of opioids because of the fear of respiratory depression which seems to be a big problem in palliative care. But palliative care doctors were advocating for the use of opioids for the treatment of this patient group  - but I must say they are COPD patients who are probably at the most severe stages of COPD. I wonder if these are the ones who would fit your description? There were patients who had been prescribed morphine who said it  had changed their quality of life. I read the study mentioned but remembering what the palliative care doctors do, I’m still not sure about this and I think it might be that it’s beneficial in some patients and you must remember that in our low and middle income countries we are seeing the patients in their very late stages . The diagnosis is coming late, pulmonary rehabilitation is not very strong in our country. There’s a lot of stigma between the patient and the doctor about tobacco-related diseases. Either you have TB which has its own stigma, or ‘you brought this upon yourself’. These patients are very late and in severe stages of disease, but sometimes morphine is the one that actually changes the quality of life.

Oxygen concentrators are also widely used in this group of patients   That is mainly symptomatic, but we do teach about the use of the fan to help with breathing . There’s very little in the way of support groups or rehabilitation in our country. Very little of these other lifestyle [factors] that we can introduce to our patients.

Su May

Do you think the definition of the patient group between the UK and in low and middle income countries may be different? And that these are patients with very advanced disease?

Sian

I think there’s no doubt that for a few people morphine will reduce the perception of breathlessness. Also for some people,  particularly people who desaturate markedly on exertion, there’s no doubt that for some people oxygen can reduce breathlessness when they are exerting themselves.

The people you are talking about Su-May are near the end of life  and often the research hasn’t been done involving those people and so there are uncertainties. But the research as it stands at the moment is really not compelling. The benefits are 5- 8 %,  really small, which most people say they can’t event detect as a change. So the challenge we have on our hands is to try to bring in non-drug approaches earlier because we do know they are effective and then have the skill to choose the few people who might benefit from morphine and oxygen.  But it’s not an evidence-based approach and we have to guard against moving that way as a default. Many people want to be given something to solve the problem for them,  like oxygen or a prescription and it may actually be doing harm whereas a non-drug approach given earlier would avoid that.  It’s a challenging area, really challenging.

Anna

What about the use of non- drug rated interventions in the treatment of breathlessness?

Sian

So the non-drug treatments,  these cluster into three main areas. Some of them are about being active and moving,  others are about how one thinks,  keeping relaxed like meditation or mindfulness. The third is about the way you breath and breathing technique for example Su May you mentioned hand held fan for cooling the face.

Anna

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 inadvertently can feed back and make the breathing worse than it need to be for the level of the underlying disease. So people can understandably become distressed and fearful when their breathlessness is bad and that feeling changes the feeling of breathlessness and makes it even worse.
Animation: youtube.com/watch?v=1XxzHT7mxvQ

Anna

Another example is people with obstructive airway conditions, think “I need to get more air in” and those bigger breathes can contribute to hyperinflation so causing over expansion of the lungs which makes the breathing less efficient and make it feel worse.

Anna

Also it’s so natural when you are feeling breathless not to want to move around because the moving is making the breathing worse. But if you move around less you become less fit and the fall in fitness makes the breathing worse.  These vicious cycles can go round and round  and spiral out of control.

Even for people with quite mild COPD may feel quite disabled by their breathlessness. 

What these non-drug approaches can do is to gently break those vicious cycles. And if you can break a vicious cycle you can see it can lead to a lot of good and turn things around even into a cycle of improvement.

So at its heart it’s saying there is always something that can be helpful. It may take a bit of time,  it may need people to engage and practice. For example a daily yoga practice. There are things that can make a difference and the good thing is that simply understanding how these vicious cycles work and simply understanding that moving around a bit more may make you breathless, although it’s not doing you any harm or you don’t need to take a big breath in can make a difference. 

These approaches don’t require a lot of resources and time. You may not change the person’s heart or lungs,  but you can change the way they are thinking about their  breathing and the way they live their lives.  

Anna

I think that the anxiety and panic that occurs does lead to these vicious cycles of breathlessness. They feel like they are drowning and that causes them to do all the things that worsen the situation. I agree with that - and it sounds really good that there are these measures that can be done and these measures can be low resource. But in a sense, although it sounds like it is low resource because it’s education, sometimes the delivery of educational interventions can be high resource because you have to go to them, and you need them to come together - this can be tricky. You may need to have one to one teaching. But I think this could be great. We already have hospice home care .

Su May

Yes it’s very important. When patients come to us, we want to break this vicious cycle. The patient thinks they are not getting enough breath, they are pulling a face,  they are struggling to breathe, we have an overhead fan.  We put our hand on the shoulder to offer the patient  reassurance.

It starts in the belief of the patient that I am not getting enough  air. The patient thinks, now I’m in the right place.

Pursed lip breathing is very important –

If the patient is struggling we ask them to breathe in through the nose, and out through pursed lips.

Monsur

How can you teach breathing techniques as a group -  do you see opportunities there?

Sian

If we approach patients in the earlier stages of their illness when they are not confined to the bedroom, I think we can get to that group. I think we need to start early to get them moving faster. We really need to change the mindset of respiratory and primary care doctors as well as the patient, so they don’t just push the patients away until they are at the last stages of their illness

Su May

Is prayer and faith helpful ?

Sian

Our practice is that we use non-medical or non-pharmaceutical interventions. There is a strong placebo effect. There are some passages in the Qur’an which can be wrapped and worn as a medal or on their arm. We encourage them. Some patients want to use homeopathic remedies, we allow them, because it’s not worsening their breathlessness. It has a strong placebo effect.

Monsur

Can I add, that in the UK we have a growing number of classes called ‘singing for breathing’ and although there isn’t yet a strong evidence base, it really makes sense because when people sing they are prolonging their out breath, it’s a relaxing thing to do,  you have to move to get to the pace you’re going to sing. Or even the action of singing involves movement . So it  achieves all of these things perhaps keeping people socially connected, and it links with religious and spiritual practices singing or chanting or speaking.

Anna

We talk with our patients who love poetry talk through their poems. Because that in itself seems to be very helpful. These simple things can make a difference.

Anna

I would be very interested in the Qur’anic verses Monsur,  because some members of the Muslim population do not agree with yoga because of  its associations with Hindu religion.  The people who are not Muslim – you know we have so many races and cultures in Malaysia - they may benefit from the yoga.  Most of the religions have chanting and singing. It would be great to have something that would provide solace and improve their breathing patterns.

Su May

In low and middle income countries there are many malpractices and there are some harmful interventions. Some people believe that cockroaches can be good medicine, people boil the cockroaches or eat some  - this is common in South Asia and Malaysia]. This can be dangerous.

Monsur

Also in Malaysia and bats…

Su May

How do we talk to people about the end of life?

Sian

This is very challenging area. Many people with advanced respiratory conditions don’t recognise that respiratory illness can be life limiting and reduce how long you live and your quality of life.  Many people understandably find it difficult to embark on these conversations about living and dying with conditions such as COPD. Prognosis is very hard to tell, even when people have far advanced disease. People can still live for many years  with their condition and they may have several chest infections where they get really but do  survive and then an infection comes along which they don’t survive.

Because of that uncertainty,  it make it very hard to know when to embark on that conversation and also there’s all the stigma of talking about these things in the UK and in different parts of the world.  As clinicians we fear reducing people’s hope and that we might upset them.

Anna

Something we find can be helpful in response to these challenges is called parallel planning.

Essentially, you try to have a  conversation as early as possible where you, perhaps after an admission  to hospital or something has happened which has made people take stock and think “my goodness what’s happening here?”

You have a conversation, which if I could summarise: “We’re very much hoping that things will go well – but some people find it helpful to think about the ‘what if’s – what if  things don’t go well”

and you explain that you’re actively managing the disease as well as you can but it may be helpful to plan in case things don’t go as well as people are hoping.

Anna

My experience is that people really appreciate these conversations and a chance of talking about what matters to them, what goals they have, how they see the future and then discussing treatments they may want or that they may not want. It gives people a bit of  control at a time when they are feeling out of control with their disease. That kind of conversation is usually part of this parallel plan and ‘what if’ plans can go onto the more serious eventuality.

“What if you get really unwell with your next chest infection,  is going into hospital the right thing for you or would you prefer to be [at home] surrounded by family and in a place that is more comfortable?”  Those parallel planning conversations, although you’re not diving in at the deep end to talk about death and dying, are a route to make it acceptable to talk about these things.

Anna

These conversations are often a process rather than an event

Anna

How could it be taught or used in Malaysia ?

Sian

In my study population who were very very ill, a lot said they had not had a discussion with their doctor and they were not ready. Some of them had talked to their doctors about intubation. Because they had had some episodes where they had required intubation, some of them were intubated at this late stage. So things like that still happen in my country.

It’s 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 this kind of conversation. Still I would say the people most likely to have this conversation will be the palliative care clinicians. There are less than 20 of these doctors in the country. There are  definitely not enough people holding these kinds of conversations, we should have more primary care doctors and respiratory physicians  and other doctors trained in these difficult conversations.

Su May

When someone is given a diagnosis of COPD, is that when people could be taught to start the conversation?

Sian

That’s not what is happening in Malaysia , it is quite often a late diagnosis and sometimes it’s thought to be asthma,  that’s the sad thing. We have the same word  in Malay “wheezing” – so that leads to a lot of confusion. Also asthma has a better prognosis, so that make them feel better but it makes this kind of conversation more difficult to have.

Su May

What about you Monsur?

Sian

In real life practice we have completely different levels of understanding of patients. Because patients come to you not for diagnosis - they come to get alleviation for their problem.

There is no universal answer

My patient will ask is it curable?

I try to decode, I try to assess his level of understanding.

If he is a learned person and he asks do I have asthma ? I will say “no”

If he says can I work again? I will say “yes”

We keep the message for the patient based on their level of understanding - that is an important aspect of real life practice

Monsur

Do you think that for educated patients is it possible to talk about dying or not culturally acceptable?

Sian

Yes, gradually, we send the message gradually.  I don’t make them panic,  in 2 or 3 sessions I tell them the diagnosis and prognosis, but never in one session. 

Monsur

We’ve covered a lot of ground […]

We’ve covered how you define palliative care

The idea of tapering over time rather than a set time when it starts

The problems people experience now with being invisible, socially isolated, diagnosed late, there’s fear.

But there are things that can be done

We’ve talked about treatments and not, in except for very exceptional circumstances, using drug treatments. 

But thinking about non drug treatments and how those would be adapted for different settings

A lot of educational need for communities but also primary care doctors and respiratory doctors

Not really the job of the palliative care it’s got to be everyone’s business

We’ve talked about some hopeful things such as singing and chanting,  gentle movement, poetry, faith.

We’ve talked about difficult conversations and of never trying to do it in one go, the closer to diagnosis the better, understanding about uncertainty and parallel planning and talking about ‘what if’

Sian

To summarise - a key message

Sian

What we really talking about here is trying to give people a sense of control. So the disease or disease in its advanced stages may not be fully controllable. People feel out of control in their own lives. We are trying to give them back a sense of control,  which these conversations can do no. The non-pharmaceutical symptoms control approaches can do much better than drugs.

By giving people back that sense of control, you can avoid crises. Su May you were talking about the resource expense of educating people, it takes time to engage people and so on. But hospital admissions are very expensive – thinking about the healthcare system as a whole. But for individual patients and their families it is really  unpleasant. 

So investing in supporting people with these non-drug approaches with early conversations these relatively simple approaches which do need some communication skills and definitely engagement with patients.  Overall can do a lot more good than waiting for crisis to near the end of life.

Anna

I completely agree, the patients I have been talking about – their lives are completely dominated by the disease. They have no semblance of what we would normally consider to be a normal life.  We really need to have this conversation and giving them back control much earlier and not let it reach that stage. In my country it tends to be the lower socio-economic groups who are mostly affected by this and suffer the worst effects of this. I really think there is a lot of inequity in this.

Su May

I think many primary care physicians are providing palliative care in one or other form. My message is we should generate some evidence from low and middle income countries and we should find out which model of care should be implemented.

Monsur