Achieving universal coverage of palliative care: Dispelling the myths

November 6, 2013

Many in our population need Hospice and Palliative Care, but unfortunately many are not aware of it, or do not understand its meaning. The World Health Organisation (WHO) defines Palliative care as an approach that improves the quality of life of patients and their families facing the problem associated with life- limiting illness, through the prevention and relief of suffering by means of early identification, impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.

As such palliative care is not about those who are dying, or are at end of life rather it is holistic care for those who are faced with the challenge of a serious illness that threatens their quality of life, activities of daily living, social relations and spiritual wellbeing. Many have argued that palliative care has been the missing arm of medicine; if we cannot prevent, we try as much as possible to cure but what happens if we cannot cure? Palliative care fills this gap by dealing with the patients’ and families’ distresses.

There is much confusion about the use of Hospice and palliative care terms. It is important to note that hospice is the principle, the tenet that drives the provision of the service called palliative care. In some western countries, these terms are used to define specific stages of life limiting illness for the sake of payment support. Most service providers in the world and also in our country will use Hospice to their titles. Others will use Palliative Care Units/ services/ teams. It does not really matter what is in the title, it is the service and focus that is common to all.

The focus of palliative care is the patient and their family. It is active care geared towards reducing illness burden, relieving suffering, and maintaining quality of life from the time the diagnosis is made. Life-limiting illnesses include cancer, heart disease, respiratory disease, kidney failure, HIV/AIDS, dementia, stroke and any other illness presenting with multiple symptoms and leading to a decline of a patient’s quality of life.

It is worthwhile to note that as Non-Communicable Diseases such as mentioned here increase so is the need and demand of relieving suffering emanating from them. As such, the expression terminal illness, or terminally ill are no longer being used in references to patients rather the term life-limiting illness is preferred.

The mainstay of palliative care is symptom management and supportive care. These symptoms include pain, shortness of breath, weight loss, fatigue, constipation, nausea and vomiting, loss of appetite, difficulty sleeping, constipation and wounds. These can be managed even as you undergo other modalities of treatment. Accordingly, palliative care helps the patient carry on with their daily life, improves ability to go through medical treatments, helps patients and families better understand the condition and also assists in choice for medical care. In short, patients who access palliative care early can expect the best possible quality of life.

The benefits of early palliative care are many and include pain and other symptoms treatment, improved quality of life, assisting patients and families cope well with life-limiting illnesses with full knowledge of assistance that can be provided as trajectory of illness changes, helps patients make decisions on the most appropriate treatment and interventions for them at this stage and avoid unnecessary and costly undertakings, assists patients make important ethical legal decisions that greatly enhances family cohesion and shared decision making.

It has also been shown to enhance quality of health care, avoid unnecessary hospital or critical care admissions, and reduce cost of health care for patients and families, health institutions and the nations at large. With it, the load on health care providers of making difficult decisions as illness progresses is reduced and has been indicated as a way of preventing stress and burn outs for health care workers. Interestingly, studies have shown that patients who access palliative care early during their illnesses live longer than those who don’t with one study concluding a longer life of over two months.

For the service to be available and accessible, policies towards its development and availability, accessibility, affordability and understanding of essential drugs including opioids need to be urgently made, training of health care workers and those in training is urgently needed since this has not been part and parcel of the mainstream health care training and service provision. All health care facilities need to set up palliative care services.

Fortunately our country is on the right direction towards this end, but much more is yet to be accomplished. The community at large also needs to be aware of the importance and availability of this service. We all need to work together towards the realization of this goal for we would all want the best for our families and ourselves when we face this challenge soon, we will all be saying that I have a family member, a friend, a neighbour who is going through this.

Genuine care and support for people with distress still remains the most powerful medicine that we often don't utilise enough. There is therefore need to create awareness and boost attitude change towards this condition.

Dr. John Weru is a Palliative Care Physician at Aga Khan University Hospital, Nairobi


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