Commentary: It takes a village to care for the terminally ill — and here’s how all can help

A recent article in TODAY by Ms Eveline Gan, titled “‘She’s not a burden, she’s my grandma’: Lessons from an extended family’s care for a terminally ill elder”, got me thinking about how it takes the collective efforts of the community to support caregivers in caring for terminally ill patients at home.

No situation is exactly the same – each family faces its own unique confluence of challenges and complexities.

Some are confronted by round-the-clock care needs, while others grapple with financial difficulties and the lack of support from other family members and conflicting demands between work and caregiving.

It can be an incredibly isolating experience, when caregivers feel like they have the weight of the world on their shoulders, with no respite or end in sight.

This is compounded by anticipatory grief as they hold witness to the waning of their terminally ill loved one.

AN ECOSYSTEM OF CARE

There are a multitude of factors that come into play in the ecosystem surrounding the caregiver and patient.

As a whole, we have made immense advancements in hospice and palliative care in Singapore, ever since the infamous death houses were banned in the early 1960s.

Several options are available for patients and families in the realm of hospice and palliative care, from in-patient hospices to day hospices and home hospice care, which HCA Hospice provides.

But there remain significant gaps in awareness, not just among members of the public, but, regrettably, also amidst the medical fraternity.

Referrals to hospice services are often done at a very late stage, when the ravages of disease have almost run its course, leaving patients and families unable to fully reap the benefits of professional hospice care.

In other cases, referrals are never made by patients’ primary care doctors, for varying reasons, such as a lack of awareness of hospice and palliative care within the healthcare fraternity, a reluctance on the part of the loved ones to discuss end-of-life care in detail, and believing that the existing care they are receiving is more than adequate.

A survey conducted by the Singapore Hospice Council (SHC) in 2020 found that less than half of the healthcare professionals who responded were familiar with hospice and palliative care services.

Perhaps there are also knowledge gaps in what hospice care entails, beyond clinical care and symptom management, an issue that HCA Hospice and SHC have been working on through engaging the medical fraternity.

HCA Hospice has a robust attachment programme for doctors from other institutions, providing them with hands-on experience in home hospice care.

Our healthcare professionals also regularly participate in symposiums and talks at a national and institutional level, to share their expertise.

SHC plays a key role in raising awareness of hospice and palliative care amongst both healthcare professionals and members of the public, through its biennial conference, the Singapore Palliative Care Conference, for the former, and regular outreach events in the heartlands for the latter, among other efforts.

But certainly much more can be done, in normalising conversations surrounding death and dying, among our youths and in school curricula.

We have witnessed firsthand the far-reaching benefits for patients and families when referrals are made to our team in a timely manner.

With a longer runway, the multidisciplinary hospice team is able to build greater rapport with patients and families.

Under home hospice care, nurses can guide caregivers on how to competently care for their loved ones, providing resources like hands-on, one-to-one training and demonstration videos.

Caregivers can also access a 24-hour hotline if they need timely after-hours support. Medical equipment, which are often expensive, are available for loan to support patients who wish to spend their last days at home.

Medical social workers, art therapists and spiritual care counsellors are able to attend to the psychosocial and emotional needs of patients and caregivers, helping them to find meaning in this difficult journey.

Important and meaningful conversations can take place when physical symptoms and psychosocial challenges are well managed, enabling families to create intimate memories and precious legacies together.

When there are fewer regrets, the grief journey is often a little easier to navigate.

As a nation of pragmatic people, it is only natural to ask what the price tag of such services and programmes is.

As surprising as it may be, all of these services are provided at no charge by charities like HCA Hospice, giving families valuable resources to tap in their journey.

The caregiving journey is often long-drawn, from months to even years. Having understanding and supportive employers would benefit greatly as caregivers juggle multiple commitments.

From flexible work arrangements, to adjusted job scopes and allowing employees to access time off to attend to contingencies, there are numerous ways employers can provide support to the increasing number of caregivers, as the population ages.

Family care leave is increasingly common in numerous organisations, and is a good start for helping caregivers manage work and family commitments.

In some workplaces, employers and employees can come to a mutually agreeable arrangement for the latter to take a sabbatical to attend to caregiving responsibilities.

In view of the impending silver tsunami, there is a pressing need for employers to rethink their policies, in order to continually attract talents, many of whom may become caregivers at some point.

PLANNING AHEAD

Public attitudes towards Advance Care Planning — or even simply talking about illness, dying and death — are shifting favourably as a result of the Ministry of Health’s comprehensive workplans, but more can be done.

This ties in closely with the 2023 Action Plan for Successful Ageing, part of which includes a pre-planning campaign that will run from 2023 to 2025, to encourage more people to plan ahead and engage their loved ones in discussions about legacy matters, such as a Lasting Power of Attorney.

Rather than terming it “end-of-life plans”, perhaps we can normalise it further and think of it as a crucial part of planning for our precious golden years, a way to empower ourselves to advocate for a beautiful conclusion to a life well-lived.

ABOUT THE AUTHOR:

Karen Lee is chief executive officer of HCA Hospice and has held several key appointments in the healthcare sector, spanning community care, primary care and tertiary care, covering both operations and strategic policy.