By Dr Sylvia McCarthy onFeatures
Research in palliative care is necessary to ensure that the patients receive meaningful high quality care.
RESEARCH has shown clearly that palliative care, in particular early palliative care, is highly effective in improving a patient’s quality of life by managing symptoms, reducing distress, and providing support to both the patient and their family.
The evidence is so strong that in 2014, the World Health Organization (WHO) recognised palliative care as a vital part of ‘Universal Health Coverage’ (UHC).
UHC aims to ensure that everyone has access to basic health services, including palliative care, regardless of their income, disease, or location.
The next step is using research to create access and develop effective palliative care services across the Asia Pacific region. A review of a research has concluded that palliative care research in the region is growing, but remains largely centred on the high-income countries, with many low- and middle-income countries having little published research output.
Much of the research is also focused on cancer care, but the need for palliative care is growing amongst patients with chronic diseases such as kidney failure, chronic lung disease, heart failure, etc.
Much work is required to drive research in these countries to generate the evidence required for the development of palliative care services.
To reduce suffering, research is needed at several levels.
Firstly, we need to understand the patient and families whom we care for.
Palliative care is unlike other specialties, in that it is not about a specific disease or organ such as infectious diseases and cardiology.
Instead, it is about the impact that living with a life-limiting illness has on the patient and the family.
If the goal is to support patients and families to live well by reducing their suffering, then we need to understand what suffering means in our communities.
Palliative care recognises that suffering is multi-dimensional – physical, emotional, social and spiritual – and it affects every aspect of a person’s life.
It is, of course, influenced by culture. How people experience suffering depends not just on their illnesses, but also on the impact that they have on their sense of well-being, their ability to do things that are important to them, and their values and dignity.
Research into illness experience, death and dying, how people want to be cared for, what suffering means, what spirituality means in the context of the community that we are caring for – this requires qualitative research interviews exploring people.
The second level is to understand what the needs are for palliative care in a particular community.
We need both quantitative data: how many people need support, what types of life-threatening illness are prevalent, and also what kind of support that is needed.
The challenge now is how to increase access to palliative care.
Many questions need to be answered about what patients and their carers really need from the healthcare service in the last year of life.
For patients suffering from a life-limiting illness, some of their sufferings are caused by the challenges in accessing healthcare services, particularly as their health deteriorates.
We need to understand our patients’ experiences and challenge our health services to be more responsive to the needs of those using the services.
We need to understand how patients access healthcare.
Healthcare-related suffering refers to the distress that arises not only from the symptoms of a serious illness, but also from the interactions between patients, healthcare systems, and the providers.
This form of suffering can be exacerbated by factors such as inadequate symptom management, the lack of communication between patients and clinicians, the burden of medical interventions, and the psychological impact of navigating complex healthcare environments during the final stages of life.
Unlike suffering from the disease itself, which is often unavoidable, healthcare-related suffering can be mitigated or prevented through compassionate, patient-centred care, open communication, and a focus on the patient’s dignity and wishes.
Research aimed at understanding patients’ and carers’ experience of care is key to planning services that minimise healthcare-related suffering.
In many countries, specialist palliative care is now available in major hospitals.
However, research has consistently shown that patients’ needs are for care closer to home, including home care.
Developing primary palliative care is seen as key to improving access.
In many countries, specialist palliative care is now available in major hospitals. However, research has consistently shown that patients’ needs are for care closer to home, including home care.
Recent reviews of health systems in low- and middle-income countries have unique strengths and needs that affect primary palliative care services. This should guide how services evolve to meet future needs.
Research can help us in understanding our individual healthcare systems and how patients and families are accessing them; or sometimes, the question to ask is who is not accessing the services, and why?
Thirdly, clinical research is needed to understand the effectiveness of our management of symptoms and to develop new treatments.
Symptom management involves multiple disciplines: clinicians, nurses, psychologists, occupational therapists, physiotherapists, pharmacists and many more; they provide complex interventions that need careful evaluation.
Our understanding of many symptoms such as pain and breathlessness has grown over the years, but symptoms such as fatigue and loss of appetite remain challenging.
The fourth question for researchers is, how do we teach palliative care?
What is the best approach to education?
This is because palliative care requires a different understanding of the nature of illness to the one traditionally taught to health care professionals.
Finally, research is vital in implementing changes in palliative care services, and evaluating these changes.
A WHO report on the progress in palliative care since the 2014 World Health Assembly (WHA) Resolution states that palliative care needs and people’s priorities differ according to diagnosis, prognosis, cultural background, location, family support and resource availability.
Therefore, assessment of and response to needs should be context-specific and culturally informed.
Through Asia Pacific Hospice Palliative Care Network (APHN), we can share research experience, different approaches, and research methodologies used to understand the needs of our individual communities.
Presenting research results allows for wider discussion about the implication for practice.
Research results also support advocacy for palliative care services and policies to support palliative care advancement.
Finally, to ensure that we are asking the right research questions, we need to involve patients and carers from the very beginning including in the design of the research and when we implement research findings into practice.
Researchers, healthcare professionals, patients and families, and community organisations need to work hand in hand to advance palliative care in the Asia Pacific region.
Dr Sylvia McCarthy
* Dr McCarthy (MBBS DRCOG MRCGP) is a palliative care doctor at Hospis Malaysia. She specialised as a general practitioner in the UK and worked in Mozambique for two years before coming to Malaysia. She worked in the department of Primary Care Medicine in Universiti Malaya (UM), helping to develop the Masters in Family Medicine. For the past 20 years, she has been with Hospis Malaysia delivering care to patients in the community. Apart from the clinical work of attending to patients in the community, she is also involved in palliative care education and research. She is an honorary lecturer for UM, Universiti Putra Malaysia, and Universiti Teknologi Mara. She is also part of the teaching faculty for the Asia Pacific Palliative Care Network – previously in Myanmar, and now in Timor Leste. She is on the Palliative Care Technical Committee of the Ministry of Health Malaysia, tasked with developing and implementing the National Strategy for Palliative Care.
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