1. Palliative Care

2. What is Palliative Care?
P.C is holistic care that aims to relieve the symptoms of a disease or disorder, whether or not it can be cured.
Based on Jon Russell’s tenets of care:
‘To cure sometimes, to relieve often and to comfort always.’
Affirms life and regards dying as a normal process
The briefest history of P.C ever… P.C didn’t come into being in its’ modern sense until the last half of the 20thCentury. The first modern day Hospice was founded in London by Dame Cicely Saunders in 1967, and her work there established that the regular giving of morphine to patients with cancer pain achieved excellent pain control for the vast majority of people WITH NO RISK OF ADDICTION. Palliative Care became a medical speciality of the Royal College of Physicians as late as Since then, there has been considerable growth and development in many other countries as well as the UK, with a change from P.C. being limited to those dying from cancer, to becoming a concept of care that is increasingly offered as mainstream to anyone who has a serious disease or disorder. How widespread it is available as more than a concept of care are- as always – limited by financial constraints and – to a certain extent- by public and medical misconceptions of what P.C is.. There is often a delay between when a person’s illness is recognised as being beyond cure and them being referred for end of life P.C. Sometimes that recognition is never made, and this deprives the person from a time when they can make choices. Doctors, in particular, do not like to ‘fail’ a patient by not curing them, and will carry on long past the point where it might be better to plan for comfort rather than cure, and let the patient make the most of their life until death.
End of life/Hospice care is a specific type of P.C for people for whom there is no further possibility of a cure, where the goal posts are moved. This is the main area of care I involved in.

3. The NICE definition (National Institute for Clinical Excellence )U.K.
‘Palliative care is the active holistic care of patients with advanced progressive illness. Management of pain and other symptoms and provision of psychological, social and spiritual support is paramount. The goal of P.C is achievement of the best quality of life for patients and their families. Many aspects of P.C. are applicable earlier in the course of the illness in conjunction with other treatments’.
Here’s a very nice clear definition!

4. When and who Not just cancer patients
Ideally when the person’s diagnosis of a life-threatening illness is made
Not just at end-of-life stage
Palliative care patients do survive and no longer need us
We may know them for weeks, months, years
Just to emphasise what you read in the previous slides - P.C is not just for people who are dying .
You can receive P.C while you are undergoing treatments that might reverse or cure the effects of your illness. By minimising side-effects and symptoms, P.C can help you cope better with some of the aggressive treatments you might choose to undergo. If and when seeking an elusive cure becomes an unachievable goal at the expense of the patient’s quality of life, then that is the time for end of life palliative care. This does not mean an abandonment of hope and joy. The end of life P.C period can be one of the most happy and fulfilling of a person’s life. A time to mend bridges, share thoughts and make memories, try new things, yes, give up some things perhaps, but find other ways to enjoy life. To live life until the last breath.

5. Where? Most people would rather die at home.
Most chronically ill people in the western world still don’t get given a choice about where they die.
Palliative care is delivered in a person’s own home, hospice, care home, specialist Day centres or hospital
In Thailand, palliative care is almost always limited to hospitals… but more about that later.

6. Why is it important?
Puts the person (you) who is ill back in the centre.
Focuses on what is important to you and your chosen family/friends.
Assesses and communicates your needs and works to improve the quality of your life.
Helps you and your loved ones cope with the stresses and strains of your illness.
Mediates on your behalf and acts as your advocate if you are not able or willing to do so.
Ensures you have the knowledge to make informed choices that will affect the progress and course of your illness
Delivers specialist care -we have special training in pain management and symptom control…….
And ,if your condition is going to shorten your life span
Promotes living as well and as fully as you can until your death and offers bereavement care after you die.
At the first meeting we or I have with the patient, once I’m sure the person fully understands their diagnosis, the aim is to make a care plan. It’s a plan with the goal for them to live as well and as fully as possible. It is based on what they tell me is important to them, what they do, how they spend their free time.
We will listen to the person, to their concerns, what they hope for, what is important to them. Each time I visit that person, either formally, or informally, we will touch on these subjects to see if their wishes have changed or if new issues have arisen.
The person is aware of (if mentally competent) of all aspects of their care plans. I’ll talk a little bit about competency in a minute. A lot of time is spent evaluating how well symptom control is maintained. We have a plethara of charts and assessment tools we can use use. We try to involve the patient in assessing how they feel, even filling in charts after they have been shown how to do so, as much as possible, (or ,indeed,their chosen family/friends if they are not able to do so. )Whatever decision the patient makes regarding treatment options and symptom control, it is their decision. What is not their decision is to demand a treatment which will hold no benefit for them. For instance, they have a certain type of liver cancer, have read about the benefits of modified antibody therapy being used to treat others with liver cancer. Their oncologist will not prescribe that treatment because clinical evidence has shown it to be effective only in the early stages of the disease (and they have advanced disease) or against a different type of liver cancer.

7. Confidentiality, competency and conflict
Things that make palliative care harder to get right….
Not knowing your wishes if you’re not able to tell us–how do we make a decision on your behalf? Who do we talk to and why?
(Some things that make it easier)
Confidentiality
Families in conflict
Financial constraints
These are some of the issues that rear their heads frequently.
Lets imagine you have an accident, develop dementia or a mental illness that makes you incompetent in medical and legal terms to give informed consent to decisions about your health, then you may well not get what you would have wanted to happen in terms of medical and nursing interventions. In a situation like this, the medical and nursing team rely on family and friends to be able to tell us what you normally might have chosen to do in a situation. This will give some idea of what your expectations and attitudes were to your health and life in general… Were you someone that was always at the doctor, always had your flu jab, couldn’t tolerate pain? Were you a stoic, had you expressed any thoughts about what would be tolerable to you in terms of your quality of life? What were your goals, what made your day a good day? The medical team will use this information to help them make a decision in the patients’ best interests. It is important that we help the family understand that it is not THEM making the decision to end a life, say when a DNR (SHOW FORM)is decided upon, but the disease is doing that. All they are doing is giving the doctors and nurse practitioners the information about what the patients viewpoint was and how aggressively they might have wanted us to intervene. Again, the p.c team will not seek to prolong life at any cost, it is quality, not quantity that underpins end of life P.C.
If the person has had the foresight to provide an Advance Directive, or to make someone their representative via ( healthcare ) Lasting Power of Attorney then that makes it much easier!
And talking about dying and death will not hasten it towards you. If I walked out of here today, was involved in an accident, and was unable to make any decisions about the rest of my life, I have the comfort of knowing that my immediate family are well aware of what interventions and care I would or wouldn’t want.
We had a straight forward discussion. It was not difficult, and it is a huge weight of our minds – the difficult decisions that might need to be made, they can be taken with the knowledge that that is what I would have chosen for myself.
People underestimate how important this is to those who are placed in that position by unfortunate circumstances. To have that information out there (written down or just openly discussed) is a great stress reducer at an already stressful time.
There is a vast amount of information available to us if we want to make informed decisions about whether medical interventions or treatments are appropriate for us. One of the main roles of a P.C practitioner is explaining the pros and cons, burdens and benefits of treatments and letting the patient make their decisions based on knowledge and understanding. In February we had a presentation from CancerNet in Chiangmai, we still have blank Advance directive forms if any of you would like one.
And some supporting statistics courtesy of the Dying matters organisation website: 81% of people have not written down any preferences around their own death, and only a quarter of men, and just over one in three women in England, have told anyone about the funeral arrangements they would like to have after they die. Nearly 2/3rds of us would prefer to die at home, yet of the 500,000 people who die in England, 53% die in hospital. Nearly 2/3rds of people have not written a will, including a quarter of over 65s. These figures are pretty representative.
These are the words of Dr. Roger C. Bone, dying person’s guide to dying’written when he was dying of cancer ‘ By thinking ahead about what could happen – and about how you will deal with problems if they do happen, you can create a better life and a better quality of life for yourself and for the people who love and care about you. We, too, need to plan – to think ahead in order to fashion, out of the time remaining, the best of what is possible.’
Confidentiality -Families assume very often that they have the automatic right to all the healthcare information about their ill family member. They do not. I do not. Before I share any information with a family member, I need the consent of the patient to do so… if they are competent. Even if they have already an Advance Directive, We always ask the patient who they want or do not want to be involved in any decision making if they become incapacitated.. Just in case their decision has changed and who,if anybody, they want present at any visits. If they are not competent, and they have no advance directive, I, as a in my role as a senior Nurse, and their doctor, ‘may disclose confidential information to those close to the patient where this is necessary to discuss the patient’s care and is not contrary to the patient’s interests’. BMC and RCN guidance on decision making and the Mental Welfare Acts 2007,2014 Scotland. In Thailand, my experience is that the standards of confidentiality are not so firmly adhered to….. It may be just a communication issue, but don’t be surprised if the friend or employee who is there just to push your wheelchair into the doctor#s room gets asked and told far more than the patient.
Families in conflict – yet another reason to formalize what you want. When wishes aren’t well documented, families can be torn apart by having to make difficult decisions. Don’t let your illness become another stressor/ source of conflict. Tell your family who you have chosen to be your representative, and why, if these circumstances occur. Tell them where to find any document in the event of you becoming ill and ‘not competent’ as well! Then the family know it is your decision. It really does help. We can only mediate if there is family conflict, and we’d much rather be concentrating on the patient. This is a time for putting aside family conflicts, even if it means pretending rifts have been healed.
With regard to the potentially thorny issue of family members being concerned that the dying person will be upset by being given knowledge of their condition, believe me they know, they might not be able to openly accept that knowledge, but by the time they reach the end of life stage, they more than suspect. We will not lie to a patient. They know they are ill, if they want the information, we will give it to them. Fear grows well, like a mushroom in the dark.
And lastly, make no bones about it, whether you have access to good quality (or any) P.C depends on where you live and what the health care budget priorities are for that health authority.

8. A typical day No two days are alike
Assessment and reviewing of each person
Organising a team’s workload
Carrying out specialist care, training other staff/family members/patient in patients’ care needs
Pain, symptom control, Charting and recording
Care and case reviews
Keeping everyone informed
Negotiating and navigating the Health Care maze on behalf of the patient.
My days very much depended on what hat I was wearing. Whichever one I wore – no 2 days were the same. Probably the most important skills I utilized each day were those of listening, observing and assessing, talking and giving information. Liaising with those who needed to be included. As well as delivering specialist practical care .

9. My typical patient
Multiple pathologies- not just the one disease or illness.
Multiple needs- psychiatric, social and physical
Communication and cognitive difficulties. Lack of competency
End of life stage
Their complex needs are often not able to be met in a formal hospital or Hospice setting.
Age range –’Young Chronic Sick’ to ‘Elderly Frail’
I included this just to illustrate the variety of people who may receive P.C in the UK. Like a great many nurses in this field, I worked outside the walls of a hospice and hospital setting… out in the big world of the community. Though many of my patients were those who had chosen to die in their own homes or long term care setting, many patients were not able to be nursed in formal healthcare environments. The majority of these patients had very complex needs, often displayed challenging and disruptive behaviours, often had moderate to severe dementia as well as their other conditions, psychiatric conditions such as depression, bipolar disorder, schizophrenia and addiction issues. At the other end of the spectrum would be younger people dying from something like brain cancer who had chosen to die at home or in a long term care home with their families able to stay nearby or actually on site.

10. Who could be part of the Palliative care team?
Palliative Care Consultant (not always)
Specialist Doctors eg Oncologist, Cardiologist (not always)
The GP or Family Care Doctor (always)
Palliative Care Nurses/Clinical Nurse Specialists/P.C. Practitioners, other types of Nurses
Psychologists and psychiatrists, Dieticians, O.Ts, pain specialists, Physiotherapists, pharmacists, Continence care specialists, prosthetic technicians, social workers, spiritual and religious support workers etc
The Patient and their family
And many more…
So that’s more or less what P.C is, ideally, throughout the UK. Now how about here???

11. Palliative care in Thailand
Almost all P.C is currently only available in hospitals
Cancer is a leading cause of death here. (68 per 100,00 people/year)
Palliative care here is predominantly more restricted to those with cancer diagnosis, HIV/AIDS, and to the end of life stage.
Patients are not always considered as the driving force and have care delivered to them, and around them. ‘Doctor still knows best’.
If available in the community, it has – until very recently- been limited to HIV/AIDs patient esp. children.
The focus is often on spiritual and cultural care, the spiritual wellbeing of a patient taking primary position in end of life care.
Many hospice facilities use traditional herbal medicines.
The problem of opiates.
Families are more naturally involved, particularly in the basic physical care of a patient.
Hospice and p.c. are not currently covered by the universal coverage scheme.
Research shows that Doctors may tend to be more aggressive in their approach to medical interventions to prolong life and reluctant to move to end of P.C concepts even when there is no benefit.
The nearest main Hospital with a formal p.c. programme is at Maharaj Nakhon Hosp. In C.M
Things are changing.
What’s the situation like in Thailand?
Very much a time of flux and development.
Thailand has a family orientated society – this is a big plus when it comes to supporting the person who is ill, and the tightly bound rituals of Buddhism offer a great deal of support to the family in their community. Care of the dying has been provided naturally by family care givers, relatives and Buddhist monks and nuns. More organised P.C here has been very much the work of a few individuals.In 1992, the Phrabat Nampu temple in Lop Puri province opened a hospice for people with aids and this unit now includes an inpatient unit with 400 beds. Some other private hospices later developed, but almost exclusively focused on care for those with HIV and AIDS.
In 1998, the Mahavajiralongkorn Cancer Centre, the first hospice operated by the Thai gov. was opened in central Thailand, it’s organisation was influenced by the Australian and American models, with patients being referred there by there doctors. Unlike the foreign models, it does not provide breavement care, that being deemed an areas where Thailands tradition of extended families already offers sufficient support.There is another big difference, patients are only allowed to stay 2 weeks at the hospice, during this time, their family members learn to look after the patients. They are then discharged to their own homes. Nurses visit to support and help as necessary. Pain medication can be prescribed for patients based on a nurses assessment and communication to a physician. Opioids are provided only in tablet Morphine sulphate and patch Fentanyl forms. There are now two P.C centres that work within all areas of their hospital, and they are being developed to be training centres in 2014, with 2 more centres being dev. In 2015 to cover every region in Thailand. Where they are I haven’t found out yet!!!!There are plans to link p.c. to primary health care and also to deliver home care. The Thai Palliative care society is working on how to get P.C included as part of the undergraduate medical curriculum. A project supported by the Health Promotion Fund has invited Dr Suresh Kumar, a pioneer of P.C. in India, as well as Kate Introna, who worked as a nurse in the P.C centre at St. Georges hospital in Sydney, to assist with the training of nurses.
Another big development is the Centre for comprehensive care of the elderly and hospice down in HuaHin.
Access to opiods is a problem in Thailand, partly due to issues with trafficking of illegal drugs through the country.
Dr Pairojkul also noted “ We find physicians are very aggressive with treatment even though they know the diseases are in advanced or end stage. We have a long way to go”
Thailand has done a massive amount of work in developing it’s health care system in the last 30 years, it is to be congratulated for that. Because of it’s need for rapid growth in the primary care fields, of course, that’s going to mean some areas of care haven’t yet been embraced as fully as elsewhere .. And P.C as we know it in the west, is one of those areas still in the embryonic stage. But the need for developing P.C has been recognised. A Thai Palliative Care Society was formed in 2013 following Thailands hosting of the 10th Asia Pacific Hospice Conference in Bangkok.
At that conference, Dr Pairojkul, a leading force for the dev. Of p.c in thailand, commented that “P.C in Thailand is still in the beginning, still only isolated services, but I see now more people are starting to have more interest, especially in the nursing profession”.
The International Association for Hospice and Palliative Care (based in the USA) gives a directory of P.C services, which I’ve included as a copy in the contacts handout.There are no contact details on that list however, so It’s up to you to find out more.

12. FAQs 1, When there is elephant in the room, how do we talk about it?
2. How long have I got?
3. What might happen if I become very ill or need terminal care here. Should I go back to my home country?
4. What might happen if I die here?
These first 2 questions are, in some wording or other, often asked of those of working in P.C, the last two might have relevance to those of us who live long-term in Thailand.
No answer is a ‘one size fits all’ solution, but I’ve tried to draw together some of the advice out there, and that I have found useful.

13. The elephant in the room
If you or a family member are dying or very ill…
In simple, very general terms, how much it will be natural to talk about illness and death within your family and circle of friends will depend on how openly you have talked about ‘difficult’ subjects in the past, and the influence of any cultural and spiritual beliefs you may hold.
If you consider that even amongst the professionals there is a lack of ease in broaching the subject of dying, 60% of family doctors in the UK rated themselves either as ‘not confident’ or ‘not very confident’ in initiating conversations about end of life…. then you can understand why so many people never feel able to acknowledge there is a big grey pachyderm in the corner.
Not everyone will wish to talk about their illness at all. To some people, opening up about their thoughts and feelings is pure anathema. But confronting a terminal illness cannot and should not be done alone. But don’t rush it until you feel ready. If you don’t want to talk about your diagnosis right away,don’t force yourself. You might find that once you have learned to live with the reality of news for some time, you can do so then. You may only want to talk about it with certain people. In general, open and honest communication is a good idea. Your family and those closest to you deserve to know you’re dying. You are not ‘sparing them’ by not telling them. People can cope with what they know. If you can’t face telling them yourself, find someone you trust to do it for you. Don’t isolate yourself and withdraw from people who love you. I can guarantee that most of us will not respond as well to the news as we would have liked to do. We might not know how to respond, we might not know what to say or do. Maybe people will avoid you altogether rather than try and have a conversation with you.
Rather than just repeat what others have written … I’ve printed off some guidance - ‘Starting to talk about your illness’,

14. How long do I have?
If you notice changes starting to happen over the course of each month, then months.
If changes are starting to happen each week, then weeks.
If changes are starting to happen every day, then days.
But remember… days can become weeks, weeks can become months…..
At this point in history, doctors have got to the point that with a lot of illnesses and diseases, (unless there is some new treatment) they have a fairly good idea of what the course of the disease will be. But, even when the diagnosis is definitive – stage 4cancer – that’s a cancer which has spread to other sites in the body, it is almost impossible to give a definitive answer to an individual patient. A sensible doctor will tend to give ranges rather than exact figures. For every person whose relative says, ‘he was given six months to live, but he’s still going strong a year later,’ there’ll be another small minority who don’t make it past a month. That’s statistics. Let me give you just one of many an example I could relate of how difficult it is to say when someone is likely to die – from my own experiences. How long would you give someone to live without food? How about without water?
Betty was an 80 year old woman who had breast cancer, dementia and had suffered a number of small strokes that affected her mobility. She then had a big stroke that rendered her unconscious, her stroke being so severe that she was unable to swallow her own saliva. In light of her underlying terminal diagnosis, and with the knowledge of her family, we started her on minimal infusion rate of 500mls Normal saline /24 hours sub-cutaneous fluids only as well as full comfort care, with the explanation to the family that these fluids were in place for 48 hours only to give her time to show any sign of her consciousness level, and more importantly for her swallow reflex to return. Again, this decision was based on what this patient had indicated she might have wanted if asked. If her swallow reflex was still absent after that time, it was unlikely to return and we would stop all interventions except those for comfort in her last few days. There was no improvement in her condition. . Betty lived, never regaining consciousness and never exhibiting any signs of distress, for a further 32 days after fluids were stopped. How? There was no stress, the ambient temp. was optimal, she was reasonably well covered, and her body broke down fat and muscle to make just enough fluid and food to keep her systems going, though when she died she was considerably less of a woman than she had been. Her skin was intact, her mouth and tissues kept moist because of good quality care.
She was not unusual, but, as I said earlier, guestimates given can be mistaken in the other direction toowith a patient living a much shorter period of time than anticipated. Is it safe for me to go on holiday? Mum looks stable at the moment– then I have a nice chat about ifs, what would you like to do, have you made your goodbyes, what do you feel your mother would want you to do…. Etc,because, you never know. The great ewassueance would be in these circumstances that the family felt they could trust the team, and that if at all possible, someone would be with their family member at the end of their life.
All that being said, for those of us who have been involved with many deaths (that makes me sound like a mass murderer) have learnt to judge fairly accurately when it gets to the final stages of a person’s life.

15. Falling seriously ill or dying in Thailand
If you have a ‘support system’, use it.
Ask the questions before you need urgently given answers.
Find out what you/ your family need to do.
Some of the people to notify when a non-Thai dies.
Burial, cremation, sending a body back to a ‘homeland’.
Things are different here.
Im going to wonder into the personal experience zone here as well as give you some more formal information/ contact details.

16. Things to do now
Things to think about if you’re seriously ill and you want to be looked after at home here.
If a foreigner dies in Thailand
A village funeral
Going back to your homeland

17. Epitaph
This was written by Rex Winsbury, when he ‘ was declared to be dying, but did not’.
“Having feared death all my life, now that I am confronted with it, I no longer fear it, only that the period leading to my death ( a period whose duration, trickily, I do not know) will have been a waste.
Had I during my life feared death as little as I do now, I would have dared more and better things. Only slowly is the power conferred by loss of that fear, growing upon me. Partly this is because I am afraid of that loss of fear. Where will it take me? My final need is to find out that last truth. That is one need that, I suspect, no one else can help with.”
Does anyone have any questions?