Navigating end-of-life care

AS individuals approach the end of life, the focus of medical care often shifts from curative treatment to comfort and quality of life. This transition can be daunting for patients and their families, but understanding the available options can provide clarity and peace during this challenging time.

Palliative care emerges as a compassionate and comprehensive approach to end-of-life care, addressing not only physical symptoms but also emotional, social and spiritual needs.

Palliative care, as defined by World Health Organization (WHO), is a specialised medical care aimed at improving the quality of life for both the patients and their families dealing with life-threatening conditions.

Unlike medical treatments that primarily target the disease, palliative care takes a holistic view, addressing a broad spectrum of needs.

Many people mistakenly believe that it is only for the final days of life, or that it means giving up on curative treatment.

In reality, palliative care can be provided alongside curative therapies and is appropriate at any stage of a serious illness, or as the main focus when curative treatment is no longer effective or desired.

For many individuals facing the end of life, the desire to spend their final days in familiar surroundings, surrounded by loved ones, is paramount.

This preference for dying at home has significant implications for how end-of-life care is structured and delivered.

Palliative care, with its holistic and patient-centred approach, supports this wish by providing comprehensive care that can be administered in the comfort of one’s own home.

The place of death is a deeply personal choice influenced by cultural, emotional and psychological factors.

Studies consistently show that most people prefer to die at home rather than in a hospital or other institutional setting.

This preference stems from a desire for comfort, privacy, and the presence of family and friends during their final moments. Home provides a sense of control and familiarity that hospital or institutional settings often cannot match.

Palliative care at home

Palliative care at home offers a tailored approach to end-of-life care that aligns with patients’ wishes to remain in a familiar environment. This model includes several key components:

1. Comprehensive symptom management: Palliative care teams manage pain, nausea, breathlessness and other symptoms to ensure that patients remain comfortable. This is achieved through a combination of medications, therapies and support services;
2. Holistic support: Beyond physical symptoms, palliative care addresses emotional, social and spiritual needs. Counsellors, social workers and chaplains are integral parts of the team, providing support to both patients and their families;
3. Coordination of care: Effective palliative care at home requires seamless coordination between various healthcare providers. The palliative care team collaborates with primary care physicians, specialists and hospice services to create a personalised care plan that aligns with the patient’s values, preferences and goals, and;
4. Family involvement and education: Families play a crucial role in home-based palliative care. Teams provide education, guidance and training to the family members, equipping them with the skills needed to care for their loved ones and ensuring they have access to support. Some well-established home hospice teams can offer round-the-clock support for patients and families.

Dying at home offers several significant benefits. Patients experience an enhanced quality of life, being in a comfortable and familiar setting surrounded by personal belongings and memories that provide emotional solace.

They often feel greater control and autonomy over their care and environment, which contributes to a sense of dignity and independence during their final days.

The presence of loved ones and the absence of a clinical, impersonal hospital atmosphere provide substantial emotional and psychological comfort.

Additionally, home-based palliative care can be more cost-effective than hospital care, reducing the financial burden on families and healthcare systems.

Palliative care at hospice, ward

Despite its many benefits, home-based palliative care also presents challenges.

Caregiver’s burden can be significant, and not all families have the resources or ability to provide round-the-clock care.

Additionally, access to home-based palliative care services can vary depending on geographic location and healthcare infrastructure.

Therefore, some patients and families may opt to be cared for in an in-patient hospice or a palliative care ward.

The key features of in-patient hospice and palliative care ward are these settings are designed to provide intensive symptoms management with dedicated interdisciplinary palliative care teams to ensure seamless continuum of care that is coordinated throughout.

Some in-patient hospices are also designed to be comfortable and welcoming, allowing for personal touches and family visits.

Both hospices and palliative care wards offer emotional and psychological support for patients and families to cope with the stress and grief associated with end-of-life care.

Decision

As end-of-life care continues to evolve, palliative care stands out as a compassionate and effective option.

By prioritising comfort, dignity, and holistic well-being, palliative care assists patients navigate this journey according to their values and preferences.

For those facing the challenges of a life-limiting illness, understanding and considering palliative care can make a significant difference in their and their families’ experiences.

* Dr Choo has been a palliative care physician in Sarawak since 2021. She graduated from Universiti Malaysia Sarawak and had been working as a general physician in Sarawak General Hospital before subspecialising in palliative care due to the growing need and demand for such services in Sarawak. Currently, she is leading the palliative care unit in SGH, developing services in major hospitals in Sarawak. She has also initiated the palliative care domiciliary programme across Sarawak in collaboration with local hospices, Asia Pacific Hospice Palliative Care Network (APHN), and American Society of Clinical Oncology (ASCO). Dr Choo is also involved with the training and education of nurses, doctors, and Unimas medical students. She is excited to develop palliative care services in Sarawak, be it in the hospital or in the community. Her vision is to build Sarawak to be a centre of excellence for impeccable palliative care service and training.