It’s not just about death: Palliative care is also about living well
On World Hospice and Palliative Care Day 2020 (Oct 10), learn more about palliative care through a virtual movie screening organised by the Singapore Hospice Council.
What does it mean to live well till the very end? For youth Khairul, who was diagnosed with end-stage colon cancer, it meant leaving with no regrets.
Amid the darkest moments of his life, the aspiring artist fulfilled his dream of holding his own art exhibition, themed Hope, with the help of his palliative care nurse Nicole Peng and her team from HCA Hospice Care, Singapore’s largest home hospice care provider and registered charity.
Recalling their friendship, Ms Peng said she was happy to be able to play a part in realising her patient’s last wishes and showcasing his artistic talent.
During the last months of his life, Khairul had worked hard to complete a series of paintings for the public exhibition held at the Nanyang Academy of Fine Arts. He passed on shortly after the event.
“I still vividly remember the proud faces and wide smiles of Khairul and his parents at the art exhibition,” Ms Peng said. “Khairul looked genuinely happy and contented with how his dream became a reality, despite being tired from the preparations and being anxious at the beginning. I was glad to be there to encourage him as a nurse and as his friend.”
Ms Peng and Khairul’s heart-warming friendship inspired The Sketchbook, a 14-minute film put together by the Singapore Hospice Council (SHC) for World Hospice and Palliative Care Day 2020, which falls on Oct 10.
Ms Evelyn Leong, SHC’s chief executive, said: “World Hospice and Palliative Care Day is a unified day of action to celebrate and support hospice and palliative care around the world. It is a day for us to honour all palliative healthcare workers, volunteers, seriously ill patients and their families and caregivers.”
Khairul with his friends from HCA Hospice Care at his art exhibition, Hope. Photo: HCA Hospice Care
A VIRTUAL EVENT TO COMMEMORATE SHC’S SILVER ANNIVERSARY
Organised by SHC and supported by the Ministry of Health, this year’s event in Singapore will go online for the first time on Oct 9 and 10 via Sistic and SHC Facebook Live.
To also commemorate SHC’s 25 years of contribution to the palliative are movement, on Oct 10 at 2.30pm, there will be a 40-minute screening of End Game, an Oscar-nominated documentary about end-of-life hospice care, followed by The Sketchbook at 3.15pm as well as panel discussions, which will be also be live-streamed via Sistic and SHC Facebook Live.
Through the film, SHC hopes to create awareness about palliative care and the importance of having early conversations on end-of-life care, which can provide peace of mind and allow family to fulfil their loved one’s wishes to leave with dignity.
During the discussions, head of Dover Park Hospice Home Care service Dr Yee Choon Meng, HCA Hospice Care nurse Ms Peng, actor/caregiver-turned-volunteer Nick Shen and moderator Sherman Ho from Singapore Film Society will drive conversations on palliative care, the importance of end-of-life care planning, as well as their views and experiences.
The Sketchbook is a 14-minute film inspired by Ms Peng and Khairul’s heart-warming friendship. Photo: Singapore Hospice Council
WHY TALK ABOUT DEATH?
Ms Leong said SHC’s aim is to change the way society views death and dying and encourage people to talk openly about what matters to them and make plans in advance.
“This is to avoid making decisions during a crisis, when one is emotional, or passing a burden to our loved ones when we can no longer make decisions,” she said.
While death is a natural part of life, Ms Leong said that it remains a taboo topic in society. She cited a 2018 study in the United Kingdom that revealed that young people aged 16 to 29 were least comfortable talking about death.
“Our local data suggests a similar finding, with those in the younger age groups being uncomfortable talking about death,” she said.
However, Ms Leong also pointed out a recent study that showed that Singaporeans are now more comfortable discussing end-of-life issues concerning their own death than before.
In a nationwide study on end-of-life care by Singapore Management University (SMU) last year, more than half of Singaporeans surveyed (53.3 per cent) indicated they were comfortable discussing the topic, compared to 36 per cent five years ago.
WHAT SINGAPOREANS PRIORITISE AT THEIR END OF LIFE
The SMU study, which surveyed 1,226 Singaporeans and Permanent Residents aged 21 and above, found that almost eight in 10 (77 per cent) want to be cared for at home when they approach their end of lives.
The study also revealed their top priorities at the end of life. They include ensuring their illness or death is not a financial burden to their family and loved ones, and leaving with the feeling that life is complete with no regrets. They also wish to be surrounded by loved ones and have control over pain relief and other symptom control.
On the other hand, 83 per cent surveyed feared being a burden to their family and loved ones and almost 79 per cent feared for their family members’ well-being after their death.
Most of the respondents also understood the importance of palliative care as part of end-of-life planning. Around four in five (82 per cent) indicated that it is important for palliative care to be made readily available in Singapore. Only 6.6 per cent of the respondents objected to seeking palliative care.
WHAT DOES PALLIATIVE CARE INVOLVE?
Contrary to the mistaken notion that palliative care focuses only on death and dying, SHC said it is a holistic care approach that looks at increasing the patient’s quality of life through mental, social, spiritual and physical pain management.
Ms Peng shared that palliative care not only looks at providing clinical care but also considers different aspects of care and support that “add life to days” for patients.
According to Ms Leong, palliative care can be provided in four settings – at home, as a day care service, an inpatient service or a consultative service. Costs are kept affordable through various subsidies and financial schemes, determined by household monthly income per person, she said. Medisave can also be used for palliative care services.
Patients across all ages with life-threatening illnesses, such as advanced cancer, and chronic illnesses, such as end-stage kidney failure, can benefit from palliative care, said Ms Leong.
“Caregivers, too, will benefit through caregiver training and support provided by the multidisciplinary team consisting of doctors, nurses, social workers, allied health professionals, counsellors and trained volunteers,” she added.
Having witnessed her brother’s happiness from realising his dream during his final days, Khairul’s sister Wiyah said she and her family are grateful to Ms Peng and the HCA palliative care team for walking the journey with them.
She said: “A huge ‘thank you’ will never be enough as Nurse Nicole and her team helped my brother and us in so many ways. She gave him support and checked in on his mental, emotional and physical health when he was being cared for at home. She made him feel happy and he never felt alone.”
Khairul with his family. Photo: HCA Hospice Care
A CONVERSATION WORTH HAVING
Good end-of-life care starts with conversations. Together with Tan Tock Seng Hospital Advance Care Planning team, SHC has developed conversation cards to help people discover what is important for them to live well, through their values, motivations, beliefs and life goals.
Get into the conversation and learn more about palliative care this World Hospice and Palliative Care Day 2020 by signing up for the movie screening on Oct 10 and Advance Care Planning webinar on Oct 24 (English) and Oct 25 (Mandarin) from 2pm to 3.30pm.
Catch the trailer of The Sketchbook here.
Watch the full short film here.
For more information and resources on palliative care, visit singaporehospice.org.sg.