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Palliative care beyond cancer

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Palliative care beyond cancer

While the majority of palliative care recipients are cancer patients currently, an increasing number of people with other life-limiting serious illnesses also benefit from the multidisciplinary care team’s support to maximise their quality of life to the last moment.

The Ministry of Health Singapore (MOH) Principal Causes of Death list for 2022 has ranked cancer at the top at almost 24%, with the other life-limiting non-cancer causes on that list making up over 57% of the total. In addition, with Singapore’s super-aged population, demand for healthcare is projected to increase from those with conditions such as heart diseases, advanced dementia, end-stage liver disease, lung disease, kidney failure, and stroke, to name a few.

In May 2023, Senior Parliamentary Secretary for Health Ms Rahayu Mahzam reported in Parliament that the number of terminally ill individuals receiving community palliative care has risen by 30% over the last five years, reaching 8,800 patients last year. MOH anticipates this rate to increase.

Advanced Practice Nurse Tang Ping Sin at St Luke’s Hospital, the expert interviewed for this issue’s Ask the Expert column has cared for more non-cancer patients, not just in her current position but also throughout her previous placements at Assisi Hospice and Outram Community Hospital, “I’ve been seeing more palliative patients with end-stage organ failure being admitted.”

Woodlands Health Senior Medical Social Worker Janice Tng has also experienced a similar increase in her capacity, seeing more patients with kidney disease and end-stage kidney failure opting for palliative care. “For frail patients, dialysis may be associated more with risks than benefits, while others perceive it as a routine that impacts their perceived quality of life, so they prefer conservative management, and thus require palliative care support towards the end of their life.”

The founder of the modern hospice movement, the late Dame Cicely Saunders, envisioned compassionate care to address the “total pain” of those facing progressive life-limiting illnesses. This pain can be emotional, spiritual and psychological, and afflicts for both cancer patients and those with serious non-cancer illnesses alike.

Palliative care for both cancer and non-cancer patients is a holistic patient-centred approach that recognises each individual’s personhood and respects their unique wishes and preferences. The dedicated care team cares for the whole person, taking into account patients’ symptoms, psychosocial and spiritual aspects. Palliative care further extends to practical, emotional and spiritual support to their caregivers and loved ones. According to Nurse Ping Sin, the palliative care team seeks to support patients and their families throughout this last journey.

Nevertheless, there are challenges in getting more non-cancer patients to accept palliative care.

ADDRESSING NON-CANCER PATIENT CONCERNS

One challenge for non-cancer patients in accepting palliative care is the uncertainty in their prognosis, according to the Deputy Medical Director and Head of Home Care Services at St. Andrew’s Community Hospital (SACH), Dr Angeline Seah. “People with non-cancer life-limiting conditions have more uncertainty in their prognosis, with many at high chances of dying if not provided with careful, full active, specialist care, with some dying in spite of that because of the difficulty and complexity of providing such care,” she said. There are also those whose life could not be prolonged due to complete organ non-response to treatment, and deterioration too accelerated, giving little time to bring in an additional palliative care team.

Dr Seah’s colleague, Dr Ng Liling who heads the Community Medical Services, feels that awareness and referral could also play a part. “In the context of the nursing home, the care staff needs to be able to identify residents who are deteriorating so as to make appropriate and timely referrals. The lack of knowledge or experience to identify a dying resident can result in a delayed transition to palliative care,” she said.

To improve access to palliative care, the 2023 National Strategy for Palliative Care by MOH states that one factor is clear training requirements to “build basic palliative care capabilities in nursing homes, home care and primary care”.

“At St. Andrew’s Nursing Home (Henderson), the nursing home care staff works closely with the SACH Violet Programme Team (VIP@Home), SACH Home Palliative Care Programme, and refers to the VIP team when the criteria for referral is fulfilled,” said Dr Ng. This programme was developed by SACH in collaboration with Changi General Hospital and St. Andrew’s Nursing Homes to provide care to non-cancer patients; it took home the Singapore Health Quality Service Award 2022 for the Best Team.

Assisi Hospice’s Senior Consultant Dr Gwendoline Soh revealed that in 2022, a third of patients admitted into the Hospice’s Inpatient, Home Care and Day Care services were non-cancer patients and this number is expected to rise. “Available education opportunities in palliative care have allowed and encouraged physicians and other healthcare professions from different training backgrounds to embark on generalist palliative care provisions within their own scope of practices. More community services have sprouted to serve the increasing demands and recognition of persons with serious illnesses. Assisi Hospice has also worked closely with referring hospital teams from non-cancer specialties in assisting with continued holistic care for patients within the community through our interdisciplinary care approach,” she said. Despite current efforts, more still needs to be done to reach out to support this particular group of patients and their caregivers.

However, there are some common barriers that patient’s loved ones, caregivers, care teams and even community outreach groups have to contend with.

OVERCOMING COMMON BARRIERS

There are psychological and social barriers that have to be addressed. As medical science progresses, it has become a sort of ‘own goal’ in that people would rather believe in the success of the treatments than think about palliative care. Death and dying are also considered taboo topics, particularly for the older generation. Furthermore, there is reluctance to make changes while clinging on to a course of treatment, especially where a familiar clinical team is concerned.

“People often prefer the status quo, especially when change is perceived for the worse,” said Dr Soh. “Having their own trusted non-cancer physician journey alongside with them through the difficult times remains comforting for patients who have good long-term relationships with them.”

This prevalent mindset is also pointed out by Dr Seah, in addition to other factors for patients’ reluctance to go for palliative care. “The family’s hope of their loved ones being able to survive a bit longer, the patient’s willingness to tolerate pain and other symptoms for the possibility of being able to live a little longer, the ability of curative treatment to relieve symptoms, and the worry that complexity of their medical care requires much medical oversight that cannot be performed by the palliative team are some barriers,” said Dr Seah.

People are generally not aware that palliative care can go hand-in-hand with active illness management, if deemed appropriate, and should not be looked upon as a sign of ‘giving up’. “At the heart of palliative care is holistic patient care, encompassing the physical, emotional, mental and spiritual,” said Dr Ng.

Ms Tng agrees, “The general public may not be aware of the psychosocial aspect of palliative care that preserves quality of life for patients and their caregivers by enhancing support for patients who are going through serious or life-limiting illnesses as well as assisting they caregivers or next-of-kin.”

Therefore, healthcare literacy is an aspect that cannot be ignored. Dr Soh stressed, “As our population ages in this current world where information sources are abundantly available, it is also important for systems to support people as they navigate through the information to increase one’s healthcare literacy.”

ACCEPTING PALLIATIVE CARE FOR NON-CANCER PATIENTS

According to Dr Ng, what she has described as “the pearls” of palliative care for cancer patients can also benefit non-cancer patients as well, such as physical symptom management for the patients and grief management for their loved ones and families.

Although the patients’ trajectory of illness has to be communicated clearly, such as the expected restriction on “Daily Activities of Living” and decline, both of which could be unpredictable and more rapid in non-cancer patients in comparison, detecting palliative care needs and responding to them makes it worthwhile. “Providing responsive disease management and symptom control, supporting psychosocial aspects, and maintaining quality of life in the comfort of their homes without detracting from longevity are all hallmark features that can convince people,” said Dr Seah.

In addition, psychosocial interventions and support for non-cancer and cancer patients and their loved ones provided by medical social workers are similar. “Counselling for issues relating to grief, death, and dying, as well as practical ones like financial assistance and care planning, can be offered to patients and their caregivers or next-of-kin as appropriate,” said Ms Tng.

“Early conversations about palliative care are essential,” said Dr Ng. “It’s important to talk about the benefits of palliative care for both would-be residents and their caregivers and families.”

Dr Soh concurs. “Raising awareness and enhancing engagement through events, for example roadshows, seminars, workshops, conferences, within the community and within the healthcare sector is important.”

Singapore Hospice Council regularly runs a “Living Before Leaving” Ask the Expert series in partnership with the National Library Board as well as Palliative Care 101 courses. Look out for other activities by following SHC on Facebook, Instagram and LinkedIn.

These awareness-raising activities are meant to serve as conversation-starters about the benefits of accepting palliative care and an end-of-life journey that maximises one’s quality of life and provides support for families and loved ones. “Having the difficult and important conversations between healthcare professionals, patients and their loved ones early enough will help with care planning and enhance understanding of patients’ hopes and concerns, giving them a chance to address their worries,” said Dr Soh.

As Nurse Tang stated in her interview, “It’s a meaningful journey to ensure that it is as smooth and painless as possible for the patients. Each loss is real to us.” 

And that is the ultimate gift of Dame Cicely Saunders’ vision, the legacy that every palliative care practitioner upholds: “You matter because you’re you, and you matter till the last moment of your life.”

Photos: FREEPIK.COM

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