- 1 Introduction
- 2 Here we go
- 3 Why?
- 3.0.1 Longer life expectancy and ageing population, with the attendant increase in prevalence of chronic diseases
- 3.0.2 Shift from acute, sudden and unpredictable deaths in the last century (e.g. due to infections and accidents) to deaths due to cancer and chronic diseases, which are preceded by a period of progressive disability
- 3.0.3 The recognition that palliative care can meet the complex and multiple needs (e.g. physical, social, psychological, spiritual) of patients at the end of life along the different trajectories of illness
- 3.0.4 The need to restructure health care systems to deliver good quality care at the end of life
- 3.0.5 The availability of costly medical technology that may prolong life without improving quality of life
- 3.0.6 The recognition that many patients suffer from pain and other distressing symptoms at the end-of-life
- 3.0.7 A number of scientific studies have demonstrated that palliative care improves pain and symptom management, enhances quality of life and mood of patients, increases patient and family satisfaction and may improve survival of patients
- 3.1 My own take
- 4 How do I know they are going to die?
- 5 Lecture given on 20 October 2017
- 6 What can I do?
- 7 Advanced care plan
- 8 Symptom control
- 9 Care in the last days of life
- 10 Palliative Care Framework at the Workplace
- 11 References
Palliative care is an extension of our good care provided to all patients, irregardless of whether they have a life-limiting illness or not. I like to call it “Good Practice”.
Like how we would provide basic medical care, basic food and basic nursing care to patients, we must provide a platform for our patients to air their “palliative care” needs as well.
Where does it start?
You might be thinking: “This is the stuff doctors do.”; or “I am too junior to do this.”; or even “I feel awkward talking about this.”
Don’t feel like this. Everything starts from a simple conversation, a simple question. If we close our minds to it, we will be blind to the beauty of the world, the beauty of a simple conversation between a healthcare provider and his/her patient.
With good rapport and good understanding of the patient, his/her background, his/her troubles and everything bothering him/her, it is only natural that we will come to conversations that go like this…
This is normally where it starts…
- “I very old already lah, just let me die lah…”
- “The other patient [insert other family members/relatives] was just sitting there that day, now he/she is not around…”
- “I very sick now, how long more do you think I can live…”
- “I live a long life already, I have no regrets already…”
- “I very pain now leh, can you let me go…”
You look around, and there is no one else. You want to look away, but here you are pressed hard against the bare soul of this person in front of you.
The chosen one is you.
YOU! Yes, you. Bare your soul to the patient and continue this conversation. Don’t waste this electrified moment by saying another word of
- Denial : “No, no auntie, you are not going to die.”
- Distraction: “Oh, auntie, it’s lunchtime now.”
- Escape: “Oh no, you don’t say that. Let me go and call someone else. [insert another teammate]”
- Useless advice: “Oh, it’s OK. If you eat A + B + C, then this will not happen to you.”
But stay. Stay in this moment and breathe. Embrace your own humanity (and weaknesses) and give a reasonable reflection of what the patient is telling you.
“But hold on, doc! Nobody taught me…”
Yes, you are right, nobody taught you. But actually, I would rephrase that to mean: you actually knew it all along, but you learnt many bad habits along the way. And now I will have to reteach you how to appreciate the beauty of a flower for what exactly it is.
Here we go
This handbook is rather comprehensive. Take your time to slowly read through the relevant topics.
“Palliative care is an approach that improves the quality of life of patients and their families facing the problem 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.” from WHO (“WHO | WHO Definition of Palliative Care,” n.d.).
Did I read that correctly? That’s right! It is an approach. And being an approach, it implies a set of skills and philosophy that can be taught and shared with another person.
That doesn’t sound right. How can I “improve” the quality of life of patients by “doing nothing” sometimes?
The single most important diagram
Yes, if you learnt this, you will have learnt everything I have to say…
We try to divide the management into these three broad categories:
We consider what we can do the alleviate the symptoms, while at the same time think of how we can manage the disease better, while at the same time provide great psychosocial care. Simple, isn’t it?
Not so simple
It starts to get complex when we start to understand that every single “intervention” can have a “cost”.
“Factors considered important at the end of life by patients” by (Steinhauser et al., 2000).
- Freedom from pain
- At peace with God
- Presence of family
- Being mentally aware
- Treatment choices offered
- Finances in order
- Feel life was meaningful
- Resolve conflicts
- Die at home
You can see that most of the factors are more easily achieved when patients are not in the active process of dying, aren’t they? So screen them early, identify them and intervene, and more than half the work is done!
From the report on national strategy for palliative care (document below):
Longer life expectancy and ageing population, with the attendant increase in prevalence of chronic diseases
We are growing older and older as better healthcare is preventing us from dying earlier. Hence, we now die slowly (but surely). I won’t bore you with statistics that you can get from SingStat.
Shift from acute, sudden and unpredictable deaths in the last century (e.g. due to infections and accidents) to deaths due to cancer and chronic diseases, which are preceded by a period of progressive disability
We will see less and less “acute” deaths, while we will see more and more people dying from chronic illnesses, cancer and dementia which take place slowly and will require more of your skills to pick up and treat.
Hence, our model used to “treat” patients will need to change.
We need to recognise that the care that we give cannot be just limited to the physical and medical needs of the patient. Rather, we need to understand the patient as a whole with his/her social/psychological/spiritual milieu. What is the use of us growing so old if we cannot get quality of life anyway?
We need to recognise the trajectory of illness, and as you can see, more and more of them are falling into the second and third group.
Reference: (Murray, Kendall, Boyd, & Sheikh, 2005)
The need to restructure health care systems to deliver good quality care at the end of life
I’m sure we know, from the patients we see and the people we know, how difficult it is to get proper care to the patient as the patient gets closer and closer to the end of life. Why?
The availability of costly medical technology that may prolong life without improving quality of life
The recognition that many patients suffer from pain and other distressing symptoms at the end-of-life
A number of scientific studies have demonstrated that palliative care improves pain and symptom management, enhances quality of life and mood of patients, increases patient and family satisfaction and may improve survival of patients
My own take
The Immutable truth
Everyone dies. But if you survey the people on the streets, especially in this part of the world, you might be “surprised” to see how many people are in “denial” of this fact.
Stats for nerds
Even more stats
OK, let’s take our typical nursing home resident: a 70-year-old auntie. She will already have a yearly 1% chance of dying (mind you, these stats are done on the whole population and will not take into account the medical conditions of nursing home patients).
Reference: SingStat. STATISTICS SINGAPORE – Complete Life Tables 2015-2016 for Singapore Resident Population.
And once you are above 80, it will really be like having a clock ticking away above your head, and once you are above 90, the probability rises to 11% per year. So, why shouldn’t we be talking about this in a nursing home?
(On a side note, we really need data on mortality rates of nursing home patients in Singapore. Anyone interested to take up this project that would look nice on your resume? 🙂 )
The sad truth
If you go around and ask this taboo question in Singapore: “where would you like be at the point of dying?”, 77% will tell you “home, where all my family are with me, where I spent most of my life”. But only 27% actually do so. (Reference document: below)
How do I know they are going to die?
Lecture given on 20 October 2017
What can I do?
Advanced care plan
Care in the last days of life
Palliative Care Framework at the Workplace
National guidelines on developing a palliative service.
Report on national strategy
Lien Foundation Research
Other questions? Please leave them here.