MAKING PALLIATIVE CARE ACCESSIBLE, ACCEPTABLE AND AFFORDABLE FOR ALL, ADJOURNMENT MOTION ON 9 MAY 2023

1.???Mr Speaker Sir, being the MP of Yio Chu Kang which is a constituency with many seniors, I have had the chance to attend many wakes and speak with family members. This has allowed me to understand more about their lives, their aspirations as well as their challenges, so that I can better support their needs as their MP. Understandably, the conversations at wakes are never easy. They revolve around the last days of their loved ones, and for many, this includes the need for palliative care.

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2.???Many of the residents I have spoken to have confirmed that support for palliative care is still nascent. Many just don't know what to do. This is unfortunate, but hardly surprising. Death is an uncomfortable subject. But as they say, you can fall ill many times, but you only die once. We plan for so many other milestones in life, from marriage to birthdays, and beyond. But when it comes to our twilight years, many people refuse to face up to the inevitable.

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3.???This is also compounded by the belief that death is still considered a taboo subject in our Asian culture. Some well-meaning children may even worry that their parents or grandparents will think that they are cursing them, if they bring up the subject. However, we must overcome this reluctance and have an honest conversation about death and end-of-life care.

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4.???It is heartening to know that the clinical protocols in hospitals are being improved, and that healthcare providers are being upskilled to develop general palliative care capabilities. I am also pleased that there are also plans to engage in early conversations with patients and their loved ones on their wishes.[1]

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5.???Today, I will focus on what else we can do in terms of caregiver and financial support, and in making palliative care at home accessible, acceptable, and affordable for all.

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Caregiver Support

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6.???First, caregivers are the bedrock of a community-based quality ageing experience.?As Ling Ling has mentioned in her speech, many people prefer to die at home. Having plans such as ACP, LPA and AMD[2] in place certainly help reduce the stress that may arise amongst family members, and give clear directions for the caregiver.

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7.???However, even with these plans in place, we still need to see how best to support the caregiver. As mentioned earlier, many people are still not aware, or uncomfortable talking about end-of-life. This leads to a lot of dynamics amongst siblings, each wanting to do the best for their parents. But the definition of “best”, may not be aligned. In the end, there may not be a consensus. A stalemate persists.

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8. Often, the ones who are left to provide for the care for those at end-of-life is the child who may not be married. This can bring about a lot of negative emotions, such as resentment, and overall helplessness, for being the one left to shoulder the burden alone. So the support for the caregiver must also consider his or her emotional and mental health.

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9.???In my Budget response speech this year, I highlighted that navigating the fragmented landscape of caregiver assistance and services can be overwhelming, especially for those who are limited in their English language proficiency. I suggested matching a dedicated care coordinator with a family. These coordinators can guide caregivers to assess practical help. They can look out for their psychological well-being, and provide timely interventions when needed. Through my interactions with my residents, I would like to highlight four areas to reduce the stress of caregiving.

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10.? First, caregiver education is key. Caregivers need to understand the illness of their loved ones, the trajectory of the illness, and what to expect as it progresses. They also need to know who to call for help, especially during a crisis. This knowledge can go a long way in reducing uncertainty, stress, and anxiety for the caregiver.

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11.?? Second, peer support is also critical. Caregivers can learn a lot from each other. It can be very helpful to understand and have emotional support from people who have gone through similar journeys. Online support groups, even through simple means such as organising through WhatsApp, is a great idea. But we need to figure out the logistics of setting it up and maintaining it, as well as ensuring that it is accessible to all who need it.

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12.???Third, caregiver respite is important for those caring for loved ones that may require care for longer than a few months. Can the Ministry clarify how many hospice day care centres for the terminally ill are there? Are they adequate to meet demand? Are there plans to expand availability?[3] Would the Government consider providing respite care services for the caregiver, or make it more available like in Australia, where dying at home is more common? Such services allow carers to take some time off, and get emotional relief and help whilst ensuring that the patient is looked after.[4]

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13.???Fourth, ensuring care for caregivers. ?Many caregivers feel guilty taking a break. Some may even struggle to let go, despite family members offer to help. When their loved one passes on, some may even develop depression, if their support system isn't there. That is why all palliative care service providers should provide or link caregivers to partners who can provide emotional support during and after the caregiving period.

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Making Palliative Care Affordable for all

14.???Mr Speaker Sir, I move on to the topic on affordability. It is no secret that healthcare costs can be a huge burden on families, especially when dealing with end-of-life care. ?

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15.???Extending the use of MediSave to patients receiving care at home is a good start.[5] MOH has also set a goal to lower the percentage of people who pass away in hospitals.[6] This would require that hospitals and hospice councils offer affordable and accessible palliative care services to patients in their own homes. But we can do more. Currently, only healthcare professionals who specialise in palliative care can assist patients in making Medisave claims. But I understand that there are plans to expand this to MOH-supported home medical and nursing providers who offer basic palliative care. Can the Ministry provide more information on this? Additionally, I am interested in the progress of the pilot programme between Tan Tock Seng Hospital and Dover Park Hospice, which aims to provide patients with timely and seamless care across different settings. Are there any updates on this initiative?

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16.???Can we also consider providing subsidies for professional palliative caregiving? Another suggestion is to extend Medishield Life to home hospice care. It is also important to note that the cost of family caregiving is often not included in the healthcare financing model, even though families are often integral to care at the end of life. Let's not forget about the out-of-pocket expenses that can quickly add up. It is not just the cost of medications and supplies, but also transportation to and from hospital appointments. All these frequent necessities take a toll.

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17.???In addition, how will the shift to a capitation funding model for our healthcare help in the affordability of palliative care[7]? Is there a concern that this may lead to undertreatment, or a denial of care that could compromise a patient's quality of life, particularly for patients with complex or chronic conditions, if providers feel that providing certain services will exceed the budget? After all, patients sometimes do outlive their prognosis.

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Conclusion

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18.???In conclusion Mr Speaker Sir, I mentioned at the start of my speech that one can fall ill many times, but one can only die once. And when that time comes, we all hope for a good death. People often associate palliative care with death and dying. However, it is also about the living. How do we support those who are still alive, and have fulfilled their moral obligations as a family member, friend, a loved one, to make caregiving accessible, acceptable, and affordable?

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19.????In my response to the President's Address, I asked the House what does the “good life” look like. Today, I would like to ask the opposite question - ?what is a “good death”?

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20.????Reports have consistent findings that the majority of Singaporeans would like to die at home surrounded by loved ones.[8] Personally, unlike Ling Ling, I do not wish for fairy lights at my death bed. Certainly not beautiful flowers! But, like Ling Ling and many others, I do want to die at home surrounded by loved ones. But I also want a quick and peaceful death, without being sustained artificially by tubes and machines, and with no regrets. To live a life worth living is to be prepared to die at any time. And if I don't go as quickly, I would want those who care for me to be supported emotionally and financially in my final days. I believe I speak not just for myself, but for all my fellow Singaporeans. Thank you.

[1] https://www.moh.gov.sg/news-highlights/details/speech-by-mr-ong-ye-kung-minister-for-health-at-the-ministry-of-health-committee-of-supply-debate-2023-on-friday-3-march-2023

[2] Advanced Care Planning (ACP), Lasting Power of Attorney (LPA), and Advance Medical Directives (AMD)

[3] https://www.straitstimes.com/singapore/health/new-daycare-centre-in-novena-for-those-with-terminal-illnesses

[4] https://www.myagedcare.gov.au/short-term-care/respite-care

[5] https://www.straitstimes.com/singapore/politics/patients-receiving-home-care-can-use-medisave-to-pay-bills-from-second-half-of-2023

[6] https://www.straitstimes.com/singapore/health/boost-for-palliative-care-fewer-people-to-die-in-hospitals-by-2027-ong-ye-kung

[7] https://www.moh.gov.sg/news-highlights/details/speech-by-mr-ong-ye-kung-minister-for-health-at-the-ministry-of-health-committee-of-supply-debate-2023-on-friday-3-march-2023

[8] https://lkyspp.nus.edu.sg/docs/default-source/ips/today_most-singaporeans-want-a-good-death-but-majority-dont-get-their-wish-study_120719.pdf