When my grandmother had cancer and was dying, my family did not let her know that she was dying. Because of this, my family did not have the chance to journey with my grandmother as she fought cancer and we could not openly grieve and journey with her till the end. I was young then, I was unsure if she managed to tell us her wishes because no one told her that she was dying.
What is Palliative Care?
According to the WHO, palliative care is an approach that improves the quality of life of patients and that of their families who are facing challenges associated with life-threatening illness, whether physical, psychological, social or spiritual. The quality of life of caregivers improves as well.
According to the Straits Time article on 11 February 2022 “Palliative Care: Not an act of despair, but a loving way to ease the last journey.” A Singapore Management University (SMU) study last year found that half of the 52000 Singaporeans surveyed are open to discussing end-of-life plans with loved ones. However, the researcher who led the survey covering end-of-life issues said she faced rejections from many quarters: “many bordering on hostility”.
In my earlier blog, I had shared that I have explored with my mother on Advance Care Planning last year. Advance care planning is a national programme that aims to empower Singaporeans to choose how they would like to be cared for. It is not a legal requirement but it is a document that I had explored with my mother on the event she is uncommunicative and unable to express her wishes.
Advance care plan explores if the person wants active interventions, limited interventions comfort care. She has opted for comfort care. This means she would not want to opt for interventions like CPR (Cardiopulmonary Resuscitation), intubation. This is in view of her trajectory of her dementia where it will progress to an advance stage and is irreversiblewhere there will be a significant decline in function. She has chosen not for a nasogastric tube to be inserted in her when her dementia advances. It only expresses her wishes of not prolonging her suffering when she advances to the late stage of dementia where she may lost the ability to feed normally and since she cherishes the joy of eating right now, she could not see herself feeding artificially through a tube.
However, comfort care does not mean that the medical team gives up hope on her when she meets with an acute infection where she needs a course of IV antibiotics. It does not mean that her chronic diseases are no longer being treated.
Currently, she is still being treated for her other chronic diseases, goes for regular dental care so that she can continue to chew her food and enjoy them.
Exploration of Advance Care Planning (ACP) is a journey not a destination
I am glad that I was able to explore End-of-life issues with my mother last year. When I was growing up, this topic is usually shunned because it is considered not a filial thing to do in the Asian culture. It was a regret for me when it came to my grandmother’s death that I did not know what her wishes were and was not able to fulfil them. As a result, I am more determined to make things right this time, to find out my mother’s wishes before her dementia advances to a stage where she is unable to communicate.
In the 7th Palliative Conference held in Dec 2021 by the Singapore Hospice Council, Singapore's health minister Mr Ong Ye Kung, has mentioned that we need to discuss the sensitive issue of deaths more openly and more honestly. I agree with him that this is probably the most important thing we need to do. It has to happen within families, between patients and doctors and amongst members of our society and healthcare fraternity. It is one way to bridge the mismatch of expectations and desires he touched on during his speech between a dying patient and his loved ones.
Some myths to address about ACP:
1) Once ACP is fixed and it will not be revisited.
It can be revisited any time.
2) ACP is a legal document
It is not a legal document
I can still make a new one with her to replace the one which is no longer reflecting her wishes. It also may change with new advances in technology. With references to the opinion expressed in the article "End-of-life care in need of update", the authors highlighted that treatment decisions should be based on up-to-date discussions with patients rather than a previously documented ACP.
My mother had made the ACP before covid-19 pandemic and it is a scenario that we have not discussed. When I pondered the possibility of her getting Covid-19 which is a reversible illness, as her nominated healthcare proxy, I think she would like to be actively treated with resuscitation and intubation if needed. This is because recovery in this illness is possible. It would also mean that she will be able to given a chance to discharge from hospital and to be reunite with my family.
Based on this book "Between Life and Death" by Dr Kathryn Bulter, MD, she has written in full details on different medical interventions and how these can be applied in different scenarios. It is a good read for me and it made me realised that the hour spent with the Geriatrician and my mother on discussing ACP is insufficient and not comprehensive enough to cover all the reversible and irreversible illness that is mentioned in this book.
My thoughts on ACP :
ACP is a start to explore my mother’s wishes and views on end-of-life
It is a document that the medical team can use as a guide when she is unable to communicate her wishes
It should be revisited often or whenever there is update in the advances in medicine.
It is also a journey for patient and the caregiver to explore and for both to better understand the patient’s stand on certain issues like funeral plans, which place of death she prefer, whether home or nursing home or hospital.
(Quoting the Straits Time article “End-of-life” care in need of update) ACP should provide a safe place for a person to articulate what matters most, with the hope that by abiding by his wishes, he can secure peace and tranquillity at the end of life.
ACP relieves families and loved ones of the responsibility of making hard life-and-death choices at a stressful time.
If I have not explored any of this with her, I most probably may feel at loss wondering if I have made the right decision for her. If I have not, I would most likely have to live with the guilt of not being a filial daughter for the rest of my life. I may be stricken with guilt of not knowing what her wishes are and not able to honour her wishes.
Based on this book "Between Life and Death" by Dr Kathryn Bulter, MD, she has written in full details on different medical interventions and how these can be applied in different scenarios. It is a good read for me and I realised that the hour spent with the Geriatrician and my mother on discussing ACP is insufficient and not comprehensive enough to cover all the reversible and irreversible illness that is covered in this book. However, it is a good start. And among the way, if my mother decided to change her decisions, we can update it again.
Thus, what are we waiting for? Let us be thriving caregivers who take time to have deep conversations on all these important decisions and wishes so that our loved ones will be informed of such decisions and will be able to assist us fulfil them.
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