Enhancing End of Life with Choices and Dignity

ADJOURNMENT MOTION

The Leader of the House (Ms Indranee Rajah): Mdm Deputy Speaker, I beg to move, "That Parliament do now adjourn."

Question proposed.

Enhancing End of Life with Choices and Dignity

Mdm Deputy Speaker: Ms Ng Ling Ling.

5.36 pm

Ms Ng Ling Ling (Ang Mo Kio): Mdm Deputy Speaker, a bright and white hall adorned with beautiful flowers, maybe some warm fairy lights, certainly my favourite hymns, including "Amazing Grace" playing in the background, and my family and friends around. This is my dream funeral wake which I regularly remind my husband to ensure that I will have if he is around to see it through. Yes, this is not a typical conversation between wives and husbands, less so for parents and children, maybe even be taboo, if brought up among some elders in our midst.

In a recently launched book titled "Singapore Ageing: Issues and Challenges", co-edited by our former Member of Parliament, Dr Sushilan Vasoo. The final chapter dealt aptly with end-of-life issues as its title – "Every Ending Requires Planning" – by co-authors Lee Geok Ling and Chee Wai Yee. I cannot agree more.

A 2014 survey by the Lien Foundation found that 77% of Singaporeans wanted to die at home. However, as of 2017, only about 30% did so, with the other 70% dying in hospitals, nursing homes, hospices and other settings. Whilst the percentage who passed away at home improved to 39% in 2022, it is still some distance away from the desire of most Singaporeans.

Without destigmatising the conversations on end-of-life and normalising the understanding, decision-making and support for Singaporeans to die with the dignity of their choice, most of us would not be able to fulfil our final wish of the most definite event of our life. With a fast-ageing population, this can increasingly be an issue.

I will speak on two aspects of enhancing choices and dignity in end-of-life, namely, one, destigmatising the conversation and simplifying the planning; and two, increasing primary and community care options for supporting wishes of dying at home as far as one prefers.

My fellow colleague on the Government Parliamentary Committee for Health, Mr Yip Hon Weng, will speak on caregiver support and the need for more possibility and flexibility in the subsidies for palliative care.

Firstly, destigmatising the conversations of end-of-life and simplifying the planning. Many Singaporeans may not appreciate the range of decisions that one needs to make regarding healthcare, legal and financial matters for one who is dying until a loved one confronts death.

Efforts have been made by the Government to introduce the Advanced Medical Directive (AMD) since 1997, the Lasting Power of Attorney (LPA) through the Mental Capacity Act since 2008 and Advanced Care Planning (ACP) since 2011.

When I surveyed a group of about 40 active volunteers in my Jalan Kayu Constituency serving in the grassroots or at my Meet-the-People Session averaging at about 55 years old and above about a month ago in preparation for this speech, I found that the majority have not done any of these three instruments, with less than a handful with the LPA.

When I further inquired on their reasons, most said that they felt that there was no need at their age until much later or did not associate this as inter-related instruments for their self-determination on maintaining the preferred quality of life and dignity when we lose our mental or functioning abilities, especially in the end-of-life stage.

Nationally, the adoption levels of these instruments reflect responses of the small group I surveyed – with only about 24,682 Singaporeans having registered for AMD as of 2015, 43,000 having submitted their LPA as of March 2018, although the numbers are growing and only 4,500 instances of ACP were completed in 2018.

I explained to the group of active volunteers why I started annual health screening from the age of 40. Because I learned that risks of chronic diseases start from that age. And why I signed my AMD and LPA in the last two years when I entered my 50s. Because of COVID-19 pandemic showed me the unforeseen fragility of health and life.

However, most important of all, I shared that I only have one son and the last thing I want is to be a burden on him. The volunteers understood and agreed to the need to sign these instruments for planning. Lucky for us, the lawyers among the group offered free certification to help the rest through the application process.

I would like to suggest for the different Ministries and statutory agencies, namely, the Ministry of Health (MOH) for AMD, the Ministry for Social and Family Development (MSF) for LPA and the Agency for Integrated Care (AIC) for ACP to come together for a more concerted in enabling conversations and getting deeper understanding around these three useful planning tools and more instead of community groups sporadically conducting such training separately and whenever we have a generous enough lawyer who volunteers to do it free.

I hope that MOH, MSF and AIC can provide integrated training resources to the network of over 100 Active Ageing Centres (AACs) around Singapore which will be increased to about 220 island-wide by 2025 to conduct such conversations periodically to help more Singaporeans talk about and simplify their planning on end-of-life choices.

Next, increasing primary and community care options for end-of-life support. What constitutes a good end-of-life? A small local study in 2012 with about 60 Singaporeans aged 50 years and above identified, I quote, "Having physical comforts at the end-of-life, avoiding an unnecessarily prolonged dying process, maintaining sensitivity towards religious and spiritual beliefs, avoiding burden on family, avoiding expensive care, being cared for by a trustworthy doctor, maintaining control over decisions and achieving a sense of completion."

This brings me to the topic of palliative care. The World Health Organization (WHO) defines palliative care as improving the quality of life of patients and that of their families who are facing challenges associated with life threatening illnesses. WHO further explains that palliative care involves a range of services developed by a range of professionals that all have equally important roles to play, including doctors, nurses, support workers, paramedics. pharmacists, physiotherapists and volunteers in support of the patient and their family.

According to the Singapore Hospice Council, there are currently nine community organisations that provide home palliative care.

I would like to raise a few issues regarding the palliative care support in Singapore: (a) a lack of awareness of palliative care; (b) health, social and community players in palliative care; (c) caregiver support in palliative care; and (d) cost and subsidy issues related to palliative care.

I would elaborate on the first two issues while Mr Yip Hon Weng will cover the last two issues in his speech.

A study in 2018 showed that only half of the patients with advanced cancer were aware of palliative care support options. The other half were not. A key indication or expression of preference for palliative home care is done through ACP, which I mentioned earlier. However, as I mentioned, the adoption level of ACP is currently still low. A study of the ACP database in 2019 showed that only 1.44% of chronically ill patients took up ACP.

WHO estimates that each year, about 56.8 million people, including 25.7 million in their last year of life, need palliative care. However, worldwide, only about 14% of people who need palliative care currently receive it.

The global need for palliative care will continue to grow because of the ageing of populations and the rising burden of noncommunicable and some communicable diseases. These are demographic trends and disease burden challenging Singapore as well. Early delivery of palliative care can reduce unnecessary hospital admissions and the use of health services, thus managing healthcare costs increases.

We need to step up awareness and access to palliative care options in the coming years.

Next, on the health, social and community players involved in palliative care support. Whether carried out in a hospital, hospice or home, the support today can involve several different teams and several different care providers. The identification of "being cared for by a trustworthy doctor" in the study on good end-of-life components which I mentioned earlier, is an important one to note.

In this regard, can family doctors be gradually enabled to become a central player in providing home palliative care for Singaporeans who prefer that. The idea is in line with the spirit and principle of Healthier SG, the major multi-years initiative led by MOH to better manage the health of our ageing population and manage healthcare costs. If we succeed in facilitating for Singaporeans to enrol and build relationship with a trusted family doctor of their choice for long-term health management, surely this family doctor can be a most comforting main point of contact for medical advice relating to one's end-of-life care, if the family doctors are well-supported by home palliative care service providers, with integrated workflows from hospitals to homes.

I read with comfort The Straits Times article published recently on 1 May, titled "Leaving ICU to die at home, surrounded by family and familiar comforts". I applaud the medical teams at Ng Teng Fong General Hospital for piloting "IAMGoingHome" since October last year, smoothening the workflows from both the intensive care unit (ICU) and Supportive Care and Palliative Medicine at the hospital to safely transfer patients, who no longer seek aggressive treatments and desire to die at home, to reach home smoothly for their last wish to be fulfilled.

My wish, Mdm Deputy Speaker, for the near future, is for the Government to centrally support the piloting of such possibilities at every public and even private hospitals and hospices, and not just in one pro-active hospital like Ng Teng Fong General Hospital, integrating the workflows at some point with family doctors participating in Healthier SG. So that, in the end, most Singaporeans can have the choice to end our walk on this world with dignity, peace and in the comfort of our home.

Mdm Deputy Speaker: Mr Yip Hon Weng.

5.48 pm

Mr Yip Hon Weng (Yio Chu Kang): Mdm Deputy Speaker, being the Member of Parliament (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.

Many of the residents I have spoken to have confirmed that support for palliative care is still nascent. Many just do not 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.

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.

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.

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.

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

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.

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.

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.

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.

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.

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? 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 to get emotional relief and help whilst ensuring that the patient is looked after.

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 is not 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.

Mdm Deputy Speaker, 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.

Extending the use of MediSave to patients receiving care at home is a good start. MOH has also set a goal to lower the percentage of people who pass away in hospitals. 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 (TTSH) and Dover Park Hospice, which aims to provide patients with timely and seamless care across different settings. Are there any updates on this initiative?

Can we also consider providing subsidies for professional palliative caregiving? Another suggestion is to extend MedisSield 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 us 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.

In addition, how will the shift to a capitation funding model for our healthcare help in the affordability of palliative care? 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.

Mdm Deputy Speaker: Mr Yip, please round up your speech.

5.55 pm

Mr Yip Hon Weng: Yes. In conclusion, Mdm Deputy Speaker, I mentioned at the start of my speech that one can fall ill many times, but one can only die once. 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"?

Reports have consistent findings that the majority of Singaporeans would like to die at home surrounded by loved ones. 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 do not 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.

Mdm Deputy Speaker: Senior Parliamentary Secretary Rahayu Mahzam.

5.56 pm

The Senior Parliamentary Secretary to the Minister for Health (Ms Rahayu Mahzam): Mdm Deputy Speaker, I thank Ms Ng Ling Ling and Mr Yip Hon Weng for passionately advocating to enhance end-of-life care.

End-of-life may be a sensitive topic to talk about, but it is an important one that will affect all of us. The reality is that in Singapore, despite clear preferences for receiving end-of-life care and dying at home, only about one in four died at home over the past few years. So, we do need to discuss issues surrounding palliative and hospice care.

The hospice movement took root in Singapore in the 1980s. Today, more than 20 institutions provide palliative care across various settings. Our community providers supported some 8,800 individuals with life-limiting conditions in 2022. This is 30% more than in 2017, just five years ago.

We have come a long way since the 1980s, but much more can be done.

Today, I will highlight three areas of work to enhance end-of-life care: first, improving access to palliative care; second, better supporting caregivers; and third, normalising conversations on death and dying.

With an ageing population, more will need palliative care. We will invest in expanding our services and review our financing frameworks to improve access to palliative care. We have expanded capacity over the years. We will train more doctors, nurses and allied health professionals in specialised palliative care, particularly in home care. We are also setting aside palliative beds in upcoming community hospital developments to cater to the growing demand.

Beyond specialised services, we also want to entrench palliative care as a basic skill set for all healthcare professionals across disciplines and settings. This will require us to change the mindsets and instincts of our clinicians and equip them with the necessary skills and tools. We are working with the AIC and providers to do this, beginning with nursing homes and home care.

We agree that in the longer term, family doctors can play a role, building on relationships forged with their enrolled patients.

We are also working with hospitals and palliative care providers to implement workflows that Ms Ng Ling Ling spoke about, to enable more patients to undergo what we call a compassionate discharge back to home. This involves, for instance, providing appropriate training and resources, and implementing hand-over checklists to ensure continuity of care.

Mr Yip asked about subsidies for professional palliative caregiving and extending MediShield Life to home hospice care. To keep palliative care affordable, the Government provides subsidies of up to 80% for palliative care, as well as home-based respite care services for caregivers of end-of-life patients. Patients can already tap on MediSave for in-patient, day hospice and home palliative care and make claims under MediShield Life for in-patient palliative care.

Government-funded home medical and nursing providers whose patients are at the end-of-life stage, will soon be able to make MediSave claims for these patients, similar to home palliative care providers.

In addition, palliative care providers have done well in raising significant charity dollars to complement Government funding and reduce out-of-pocket costs. We are reviewing the overall financing framework for palliative care to ensure that affordability concerns do not deter anyone who needs palliative care from receiving it.

Mr Yip also asked about shifting to a capitation funding model for palliative care. The scope of care included under capitation funding for the Regional Health Systems does not include community palliative care. Instead of capitation funding, the pilot between Dover Park Hospice and TTSH will trial bundled funding for palliative care services across all three community settings, for example, on a per-patient per month basis. Through a simpler funding formula, providers will be empowered to decide on the most appropriate care setting for the patient. The pilot will also trial interventions to enable earlier referrals of patients with non-cancer conditions to community palliative care and care protocols, to better support them in community.

We have been working closely with Dover Park Hospice and TTSH to refine the pilot design and develop a robust evaluation and monitoring process to track effectiveness. We aim to launch the pilot in the second half of this year. If the outcomes are promising, we will consider how we can progressively mainstream it with appropriate safeguards to ensure continued quality of care.

Caregivers are the most critical factor in enabling one to be cared for at home, but they often come under tremendous stress while coping with grief and loss. We have been continuously enhancing measures to support caregivers through this challenging journey.

We introduced the home-based respite care pilot, as part of the Caregivers Support Action Plan in 2019, to allow caregivers of end-of-life patients to rest or tend to other matters while their loved ones are cared for by palliative-trained care staff. Since January 2023, hospitals can also refer patients to the service, so that patients and their caregivers can be supported more quickly upon discharge.

This takes a significant load off caregivers who often have to arrange for home modifications and adjust to new routines while dealing with the grief of soon having to say goodbye to a loved one. Home-based respite care complements care provided by day hospices, which allow end-of-life patients with stable conditions to benefit from social activities and rehabilitation while allowing caregivers to take a break. The four-day hospice centres today have adequate places to meet demand. We will monitor utilisation and expand capacity if required.

Indeed, end-of-life patients and their caregivers have unique needs. The Singapore Hospice Council (SHC) has developed and shared caregiver resources with hospitals and palliative care providers so that caregivers have the information on hand to better cope at home. The SHC will also be setting up a helpdesk later this year, so that caregivers who need advice can call in to receive timely support.

Apart from supporting caregivers with caregiving skills and knowledge, palliative care providers also support their emotional needs, linking them up with grief counsellors or support groups, if needed. This is part of the care coordination role which palliative care providers play.

Over the years, we have enhanced financial support schemes, like the Home Caregiving Grant and the Seniors' Mobility and Enabling Fund, to better support costs of informal caregiving. Other long-term care schemes, like CareShield Life, also provide cash payouts to eligible Singaporeans. They may also withdraw up to $200 in cash every month from their own or their spouses' MediSave accounts under the MediSave Care scheme. Through these schemes, Singaporeans with severe disability can currently benefit from payouts of up to about $1,300 a month. Terminally ill patients may also withdraw all their Central Provident Fund (CPF) savings in a lump sum under the CPF Reduced Life Expectancy scheme, subject to retaining a balance of $5,000 in their MediSave account.

On top of the schemes and services, we, ourselves, play an important role in ensuring that we have a good death. We need to take charge of our own end-of-life journey, to be open to discussing with our loved ones what matters to us, what quality of life means and how we would want to live our last days. We will do more to normalise conversations about death and dying.

MOH and the Public Service Division (PSD) set up the My Legacy portal in 2020 to serve as a one-stop resource to provide information on planning ahead, and tools, such as the LPA, ACP and the AMD. We are looking at further digitalising these processes to make it more convenient for the public to make these tools.

MOH, MSF and PSD are also planning a three-year campaign to increase awareness and adoption of pre-planning instruments with a focus on LPA and ACP. This will be launched later this year and will involve a range of both in-person and digital activities. To complement the campaign's activities, a series of workshops will be held at AACs, as Ms Ng Ling Ling has suggested.

We are also working with SHC to engage the community through the grassroots, corporates, faith-based organisations and schools to build a pool of advocates. Serving as a trusted source of information, these advocates can plant seeds of these important conversations amongst the wider community and spread awareness of palliative care.

Many decades ago, people routinely spent the last days at home. They would deteriorate gradually and loved ones would gather as their activity levels drop. Medical advancement has given us the belief that all conditions can be treated and life extended. This has led to death becoming medicalised. Many end up dying in hospitals, having life-sustaining treatment up to their very last breath even though this might not have been how they wished to leave.

We now know that health is, to a large extent, determined by social factors. Death is, in fact, also very much a social process. What matters to most is being with their loved ones in a familiar environment, having their final wishes fulfilled and regrets resolved. Bringing end-of-life conversations into our collective consciousness is similarly a social process. It builds on relationships and often evokes strong emotions. If we are successful in building up our preventive care system centred around family doctors and aged care system centred around AACs and community partners, we will be able to normalise end-of-life conversations amongst residents, their loved ones and care teams.

Mdm Deputy Speaker: Senior Parliamentary Secretary, please round up.

Ms Rahayu Mahzam: This is not change that will happen overnight, but I am confident that it is one which will gather pace in the coming years.

In conclusion, end-of-life care is a key priority for the Ministry. We have gathered key partners to refresh our national strategy for palliative care and will share more in the coming months. But to ensure that Singaporeans live well and leave well, all of us have to play our roles as family members, caregivers and friends and have conversations about what a good death looks like.

6.06 pm

Mdm Deputy Speaker: Order. The time allowed for the proceedings has expired. I adjourn the House pursuant to the Standing Order. I wish to inform hon Members that the Sitting tomorrow will commence at 12.00 noon. Order, order.

The Question having been proposed at 5.36 pm and the debate having continued for half an hour, Mdm Deputy Speaker adjourned the House without question put, pursuant to the Standing Order.

Adjourned accordingly at 6.06 pm.