Psychosocial burden is a significant concern in palliative care, impacting patients and caregivers. Psychological factors like depression, anxiety, and social issues such as financial constraints and subpar care quality (for instance, caregivers lacking proper training and knowledge) may contribute to care challenges.
A particularly pressing issue is the general stigma surrounding palliative care, often misconceived as solely end-of-life care or as a sign of giving up the fight against illness1. When individuals and their families perceive palliative care in this limited context, they may postpone seeking care until the disease has advanced, compounding the psychosocial distress for both the patient and the caregiver.
"Palliative care, as defined by the World Health Organization (WHO), is an essential field dedicated to enhancing the quality of life for patients and their families facing life-threatening illnesses. This approach focuses on preventing and alleviating2 suffering through early identification and the expert assessment and treatment of pain, along with addressing various physical, psychosocial, and spiritual challenges," elaborated Dr. Yee Choon Meng.
The core focus is maximizing the patient's quality of life through expert symptom management bolstered by psychological, social, and spiritual support, all orchestrated by a multi-professional team. This team typically comprises doctors, nurses, medical social workers, and counselors. In some organizations, pastoral care counselors and chaplains are also included.
Dr. Yee emphasizes the importance of fostering honest and transparent communication between patients and their families concerning treatment options and care decisions.
"Clinical skills in history taking and examination are essential; investigations are carried out only if the result will contribute to the patients' management and in consultation with primary physicians," he added.
“The resistance to palliative care usually stems from either their lack of knowledge or misconception towards Palliative Care,” Dr Yee said.
One prevalent misconception is the negative association with death and dying, topics that are often considered taboo, particularly in Asian cultures, and are usually avoided3. This, coupled with the traditional medical and nursing school’s strong emphasis on preventing, treating, and prolonging life, has contributed to the perception that palliative care is exclusively for those dying or those who have "given up."
Another negative view is the perceived high cost of palliative care services and medications. Family caregivers who leave their jobs to care for their loved ones often face the financial burden of managing the costs associated with years of treatment, medications, and other healthcare expenses4. Many caregivers and patients are hesitant to seek palliative care, even when it may be beneficial for the patients to avoid placing additional financial pressure on their families.
Dr. Yee advises that measures are in place to make palliative care more affordable. These include various subsidies and financial schemes. Government subsidies are accessible through means-testing for service providers who receive government subvention, with the subsidy level determined by the household's monthly income per person. Additionally, Medisave can also be used to cover certain palliative care services5.
Furthermore, Singapore's Ministry of Health introduced the National Strategy for Palliative Care (NSPC) in July 2023 to expand and enhance palliative care in Singapore. This change will also financially support telehealth, benefitting patients with limited mobility. This initiative seeks to empower more individuals to lead fulfilling lives that are in keeping with their values and goals.
Dr. Yee also notes that most patients and families who have experienced Palliative Care have developed a deeper awareness of how this specialty can enhance their physical and psychosocial well-being. They have come to appreciate the holistic care it provides.
“Palliative Medicine Physicians are trained to deliver comprehensive care for patients with life-limiting illnesses. This care involves a multidisciplinary approach that integrates the psychological and spiritual aspects of patient care, and it may include bereavement support when necessary.”
Caregivers often wrestle with complex care needs, including specialized nursing skills, as many patients become physically weakened. They are stressed, and burnout is common, exacerbated by a lack of practical and emotional support. Also, the financial burden is weighed heavily on their mind, as working adults often have to give up their jobs to provide care.
The same can be said of the patient. In addition to physical pain and fatigue, their emotional turmoil, such as difficulty in making end-of-life decisions, anxiety, and depression, add to their psychosocial burden.
Dr. Yee recalled a poignant encounter with one of his male patients in his 60s, battling advanced cancer, who faced a heart-wrenching decision. His son was in jail for drug offenses.
“As prisoners are allowed one visit out of jail on compassionate grounds, I posed a question: Should his son visit him in the hospital or pay his last respects at the wake? I know that he missed his son a lot.”
The patient, longing to see his son, chose the hospital visit. However, his reason was deeply moving. He wished to spare his son the embarrassment of attending the wake in prison attire and restraints, fearing the judgment of neighbours and friends.
“Even in his final moments, he embraced his role as a loving father. At the end of the day, we must remember that our patients are somebody’s father, husband, son, or brother, just like you and me, imbuing life with profound meaning,” he added.
The palliative philosophy focuses on providing a holistic patient care approach that encompasses patients' physical, social, emotional, and spiritual needs. Research has shown significant improvements in quality of life and mood when advanced cancer patients receive early palliative care intervention.
“In a large randomized controlled trial, patients with advanced lung cancer referred for early palliative care intervention led to significant improvements in both quality of life and mood6,” Dr. Yee said.
Among the common symptoms addressed in palliative care, pain is prominent. Patients with life-limiting illnesses may also contend with issues such as nausea, anxiety, spiritual distress, and more, impacting both patient and family quality of life. Collaboration with primary physicians is typical to ensure continuity of care, navigate the healthcare system, and explore treatment options. More importantly, to avoid unnecessary hospitalization.
Familiarizing oneself with the palliative care landscape and available resources empowers caregivers to navigate effectively and seek assistance when necessary. For instance, patients needing professional Palliative Care support can access services such as palliative home care and daycare. In cases where patients face terminal illnesses and high care demands, inpatient hospice care is an option to relieve the caregiving burden at home7. This knowledge helps caregivers better cope with new care needs, respite and avert depression risks.
A key aspect is the caregivers’ training and education about the patient's condition, step-by-step instruction on administering rescue medicine, symptom management, and end-of-life care. It prepares caregivers on what to expect and makes informed decisions.
“Many caregivers are adults who are part of the workforce. Many also gave up their job to look after their loved ones during this challenging period. Hence, they lose a potential source of income for themselves and, indirectly, increase the financial burden on the rest of the family. For financial help and assistance, we help with referrals to medical social workers to assist in applying for some financial schemes, which may ease the financial burden for needy patients,” he added.
As life-limiting illnesses progress or curative treatments cease, the palliative care team can help facilitate difficult conversations between caregivers and patients, especially regarding end-of-life wishes and goals of care. The palliative care team can guide these emotionally challenging conversations to ease the process. Bereavement support and grief counseling are often available to help caregivers cope with their loss.
Over the past five years, the utilization of community palliative care in Singapore has surged by 30%8, benefitting approximately 8,800 individuals with terminal illnesses in 2022. With the nation's aging population, the demand for palliative care is expected to rise, prompting initiatives to expand services, including home-based palliative care, and improve funding mechanisms to enhance palliative care access9. In response to this demographic shift, plans are underway to make palliative care an essential competency for healthcare professionals across disciplines and settings.
Palliative care is available in various settings, including hospitals (inpatient and outpatient), Palliative home care, daycare services, and inpatient hospices. Private healthcare facilities like Vickycares Specialized Homecare Services also provide palliative care options.
The psychosocial burden in palliative care can be overwhelming, affecting patients, caregivers, and families. Dealing with life-limiting illnesses, anxiety, and the financial strain of care can be overwhelming. However, palliative care can help provide a soothing journey amidst the turmoil by empowering the patients and caregivers and improving their overall physical and psychosocial well-being.
