February 19, 2016 513
Before we start off, for those who are unaware, Palliative Care is medical care given to patients whose diseases no longer respond to curable treatments. The patient has a disease which is life-limiting and life-threatening. The aim of hospice-palliative care is to alleviate the sufferings of these patients and to enhance the quality of life in the remaining days of life. Hospice work involves providing for the relief from pain and other distressing symptoms, as well as the giving of professional advice and support to families of cancer patients to help them care better for these patients.
So here is PJ’s story, we are sure that by the end of it, you too will appreciate the whole concept behind Palliative Care.
"I still remember the day my Dad was diagnosed with liver cancer, those foreign terms, the nonstop doctor and hospital visits for second and third opinion with more tests ordered, and the final verdict - He was suffering from hepatocellular carcinoma, a form of liver cancer that was caused by Hepatitis B.
It was a very tiring period then, trying to figure out our options, its associated costs and the differing opinions between doctors. We finally decided with a radio ablation therapy with my Dad and he did a few of those through 2011 and in 2012, we decided that we all had had enough. We thought it was better to concentrate on Dad’s quality of life instead of making him endure those painful therapies which only left him weak, unable to eat and had absolutely no strength to even lift his finger.
Living with cancer, is not an individual thing. The whole family and your support structure gets busy and involved. There are changes in lifestyle and diet for those around you. The care giver needs to be emotionally strong because sorting out medication and its dosage is a very daunting task. While we had stopped all form of treatments we did see some improvement in my Dad’s quality of life, for a few months. But by end of November 2012, it was becoming clear that the end of life was coming near. His liver had hardened so much that one of the doctor’s prognosis was that he had 3-6 months to live. I still remember that phone call; I took on my mobile, in my car at the parking lot. It was something that I had to tell my sisters and then later, sat down with my Dad on this matter. He was calm when he accepted the news and the oncologist told us to engage with Hospice Malaysia.
The nurse assigned to us was our source of comfort. In her first visit, she had reassured both my parents and provided advice for improvement and how we can make it comfortable for my Dad. Our hospice nurse would come by once a week to check up on my parents. Because as much as it was important to make sure the patient was doing ok, they also ensured that the caregiver’s well-being was also taken care of. She provided guidance to my Mom and also listened to my Mom’s worries and comforted her. She played a pivotal during the last hours of my Dad’s life and her utmost concern was to ease his pains while he was slowly slipping away. She was also the one that declared my Dad had died and moved on. She guided us on what to do next and she stayed on with us, hugged all of us. And then she left while we got busy with the arrangements. Looking back, we would have been lost had it not been for that one person, the nurse. We are very thankful for the hospice nurse’s presence and assistance with our night nurse. We were really very blessed to be able to ensure that my Dad was able to pass away without any feeling of pain.
My Dad left us on 28th January 2013, after fighting a 2 year battle. He had fought a good battle and he deserves his rest now. Living with cancer wasn’t easy and it takes a toll on everyone in the family. But hospice does help to make it easier and provide the proper guidance to make one’s pain slightly better, be it mentally or physically, and everyone deserves that. In my Dad’s words, he wasn’t afraid of dying but he didn’t want to see those around him sad. And that was how palliative care was helpful to me. We must all acknowledge that we are going to die and move on; it is how we end our journey, with care, comfort and dignity, which is the most important."
How YOU can be part of the movement
The Malaysian Hospice Council will also be organizing the Malaysian Hospice Council Congress 2016 from 22nd – 24th April 2016. The Congress offers you a chance to hear and interact with leading researchers and practitioners among the palliative care community. Attendees also will be able to update their knowledge, share experiences and ask questions. To find out more on the event, you may click HERE : http://bit.ly/HospiceCongress
Additionally, as Hospice’s efforts do not charge patients; the budget of the movement is supported by monetary funding from the public. In relation to this, GetDoc and Hospice Klang have set up a Pledge Funding event and a Crowd Funding event in order to raise funds to ease the monetary burden faced by the Hospice body.
Support the pledge: http://bit.ly/HospicePledge
by Nicky Lee
Your typical neighbourhood ah pek who roams on the internet to satisfy his curiosity. Bold. Loud. Talkative. View all articles by Nicky Lee.