What is palliative care?

Islamabad : What is palliative care? Do you help nurses change pampers of patients? Are you the death doctor? When Dr. Aqdas Kazi joined Shifa International Hospital (SIH) as a palliative care consultant in 2015, questions like these were routinely asked, largely because this medical specialty is still relatively new. Its importance, however, can hardly be over-emphasized for a country like Pakistan, which has an aging population that will live longer and hence require palliative support.

Talking to ‘The News’ here on Saturday, Dr. Aqdas defined palliative care as that extra layer of comfort for patients suffering from advanced, progressive, incurable diseases. Since their prognosis is poor, an attempt is made to optimize their quality of life. “Palliative care is about making the most of living when time is limited,” she said.

Asked how developed this specialty is in Pakistan, Dr. Aqdas shared that training for palliative care is not available in Pakistan. In the UK, it was recognized as a distinct specialty in 1987; it requires four years of registrar training after MRCP before one can work as a consultant.

The World Health Organization (WHO) defines palliative care as “an approach that improves the quality of life of patients and their families facing problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.”

Dr. Aqdas said, palliative care addresses the needs of patients with cancer, end-stage renal failure, congestive heart failure, stroke, dementia, Parkinson’s disease, end-stage Coronary Obstructive Pulmonary Disorder, and interstitial lung disease. “Palliative care is about treating the patient as a whole; it is not restricted to a particular organ or specialty. It provides relief from pain; affirms life and regards dying as a normal process without hastening or postponing death; integrates psychological and spiritual aspects; offers a support system to help patients live as actively as possible until death; uses a team approach to address the needs of patients and their families; and enhances quality of life,” Dr. Aqdas explained.

In simple words, palliative care focuses on supporting patients in managing their symptoms of pain; setting goals of care so patients have a voice in their care; supporting families and caregivers and providing end-of-life care by reducing futile treatments and focusing on those which are likely to benefit the patient without adding to the burden. “It is all about not giving up on the patient and being there for them when they need us the most,” she said.

Dr. Aqdas said, there are three domains of palliative care: hospital-based, outpatient clinics, and home care. Good palliative care reduces the length of a patient’s hospital stay, improves patient satisfaction, and involves lesser visits to the emergency department during the last few months of life. Talking about home care, Dr. Aqdas referred to how the use of telemedicine in the current Covid-19 climate has empowered families of patients, as well as volunteers, to look after patients in their own homes, in familiar surroundings.

Emphasizing the need to focus on what is most important to a patient, Dr. Aqdas recalled the most vital goal of one of her patients who had advance carcinoma gall bladder and renal shut down and was on dialysis. “For her, the most important goal was to be present for the nikah ceremony of her son so we arranged for that to happen in the hospital, and she was able to bless her son and daughter-in-law,” she shared in a bid to explain the importance of defining the goal of a patient or their family, and how they can be helped to achieve that goals when time is not on their side.

Dr. Aqdas also dwelt on the need to follow a decision-making model that focuses on the needs of patient as a whole, and develops goals of care appropriate to the patient’s needs. “It is important to encourage patient and family agenda setting and advance care planning, she said before moving on to narrate an example. “Recently, a patient with metastatic breast cancer was referred to me for symptom control.