Beyond End-Of-Life: Guiding Patients And Their Loved Ones Through Every Step Of The Health Care Journey

16 October 2024

KUALA LUMPUR, Oct 16 – Palliative care is often misunderstood as care solely for those nearing the very end of life. However, in reality, it is so much more.

Palliative care is also about enhancing the quality of life from the moment a serious diagnosis is given, not just in the final stages.

Dr Hayati Yaakup, consultant general physician at Sunway Medical Centre, highlights the profound impact of palliative care on patients and families, emphasising that it’s not limited to terminal cases.

Unlike its common misconceptions, palliative care aims to improve the quality of life for those with serious illnesses, offering them the best chance to live fully while managing their condition.

“Palliative care isn’t just about managing physical pain; it also provides emotional and psychological support to both patients and their families. Many confuse it with hospice care.

“To clarify, hospice care is a part of palliative care but is only for patients when treatment is no longer aimed to cure and focuses on managing symptoms during the remaining phase of life.

“Palliative care, on the other hand, focuses on improving the quality of life for patients and their loved ones throughout the entire journey,” explained Dr Hayati.

In a world where only 14 per cent of people globally receive the palliative care they need, this underscores the importance of expanding the support, especially as Malaysia’s ageing population continues to grow.

She recounts a poignant case: “One month after my patient passed away, a family member returned to me for emotional support. He had fallen into depression, and his inability to manage the emotional strain was affecting his work and overall wellbeing.”

The story highlights a crucial, often overlooked aspect of palliative care; it extends beyond the patient’s passing.

Understanding Palliative Care

“Derived from the Latin pallium (‘cloak’), palliative care focuses on relieving suffering and improving quality of life for patients with life-threatening illnesses.

“Starting at diagnosis and continuing through treatment, it works alongside specialists like oncologists and cardiologists, offering both physical and emotional support to patients and their families.

“Going beyond end of life, it involves a multidisciplinary team — medical consultants, social workers, physiotherapists, and religious figures — to address the diverse needs of patients and their loved ones,” explained Dr Hayati.

“The care journey begins with a thorough assessment and effective intervention during the diagnosis stage and progresses through ongoing management in the advanced stages of illness, and extends to end-of-life care when curative treatments are no longer effective.

“The primary goal is to alleviate symptoms and ensure patients maintain the best possible quality of life.

“Additionally, this approach offers psychological support to family members and caregivers, helping them navigate the challenges of caregiving and cope with the eventual loss of their loved ones,” she said.

Managing Chronic Conditions And Supporting Families

Dr Hayati explains that palliative care in Malaysia can be categorised into hospital-based and community-based hospices, primarily organised by non-governmental organisations (NGOs).

While both categories are tended by health care professionals, the latter is especially beneficial for patients who prefer not to remain in a hospital.

Unlike traditional medical care, palliative care mainly focuses on treating the disease holistically and patient-centred, ensuring comfort in every aspect of the patient’s and family’s experiences.

For example, palliative care may be right for people suffering from chronic diseases like cardiovascular diseases (38.5 per cent), cancer (34 per cent), chronic respiratory diseases (10.3 per cent), AIDS (5.7 per cent), and diabetes (4.6 per cent)

“With these diseases, patients may struggle with symptoms like shortness of breath or pain. Palliative care can help alleviate the symptoms and manage the comorbidities associated with the disease.

“In cases of cancer, it assists patients in managing the side effects of chemotherapy or radiation such as nausea or vomiting, allowing them to live as fully as possible.

“By integrating palliative care into the overall healthcare plan, patients can continue to receive treatment for their illness while also benefiting from the additional support that palliative care provides,” said Dr Hayati.

Dr Hayati also outlines palliative care as an emotional and spiritual support for patients’ families and caregivers in navigating the challenges of their loved one’s illness.

“Beyond emotional care, they can also rely on palliative care providers for practical assistance such as patient care education, caregiver support and education, access to necessary equipment, and spiritual guidance, ensuring they are not alone throughout the entire process, even after the patient passes away.

“By offering consistent, compassionate and clear communication, palliative providers build trust and provide stable support systems for families and caregivers,” she shares.”

Changing The Perceptions Of Palliative Care

One of the misconceptions about it is the confusion between palliative care and hospice care, many believe that hospice care is synonymous with palliative care.

Dr Hayati also shared a misconception she encountered before, in which the patient thought that their doctors had given up on the patient and eventually referred them to palliative care, linking it exclusively to end-of-life care.

However, this is far from the truth, hospice care is just one of the components of the broader scope of palliative care.

“Palliative care can be introduced at any stage of a serious illness, working alongside ongoing treatment to improve the patient’s quality of life by managing symptoms and providing comprehensive support.

“On the other hand, hospice care is specifically intended for those whose illness no longer responds to curative treatments, typically in the final months of their life,” she said.

Dr Hayati underscores that palliative care should not be seen as a sign of giving up, but rather as a compassionate approach that empowers patients and their families to live as actively as possible throughout the healthcare journey.

It is much more than just end-of-life care, it is about enhancing the quality of life at every stage of the illness.

Source: Ova

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