KENYA, Nairobi, Aug 17 – All healthcare professionals interact with people experiencing pain as part of their everyday work.
Pain is defined by the International Association for the Study of Pain as ‘an unpleasant sensory and emotional experience, associated with actual or potential tissue damage …’ The study says that pain is more than just a symptom of disease; it can be viewed as a disease state in itself.
Although pain is commonly thought of as a sensation in a part or parts of the body, it is always unpleasant and, therefore, is also an emotional experience. Treating patients who have severe or complex pain problems is challenging and this is where pain specialists step in.
According to a World Health Organisation, each year an estimated 40 million people are in need of palliative care, 78% of whom live in low and middle-income countries.
The Nairobi hospital is in the initial stages of setting up a hospital-based palliative care team. This involves a range of services delivered by a range of professionals that all have equally important roles to play including physicians, nurses, support workers, paramedics, pharmacists and physiotherapists.
Palliative care seeks to improve the quality of life of patients and their families who are facing problems associated with a life-threatening illness. It prevents and relieves suffering through the early identification, correct assessment and treatment of pain and other problems, whether physical, psychosocial or even spiritual.
Unlike hospice care which is limited to those with a prognosis of 6 months, if their terminal illness runs a normal course, palliative care is available at any stage of a life-threatening illness alongside any available curative care.
As the Kenyan population ages and the traditional family structure is eroded, the burden of treating the seriously ill grow. Promoting palliative care as a way of both ensuring quality care and reducing health care costs is increasingly important. Studies have demonstrated the beneficial effects on patient and family outcomes when palliative care is introduced into the care of those with life-threatening and/or debilitating conditions.
These include improvements in pain management, wound and opportunistic infection management; improved family outcomes; reduced hospital costs and readmissions; increased hospice use; and enhanced survival. Pain management is for total pain not just the physical pain, but for the suffering that encompasses all of a person’s physical, psychological, social, spiritual, and practical struggles.
Until the advent of HIV, palliative care was not used early in the disease trajectory nor to directly treat the patient’s disease. It is now obvious that a cure does not always have to be the goal of care to get a good quality of life. Curative care treats existing medical conditions and achieving the cure can sometimes come with an unacceptable quality of life which may go unnoticed or unspoken as treatment tends to concentrate on the disease and not the patient.
Giving palliative care alongside the treatment will ease symptoms and other burdens while holistically addressing both patient and family needs. This has shown numerous benefits to both patients, their families, and caregivers.
The Importance of palliative care
A study in the New England Journal of Medicine of newly diagnosed metastatic non–small-cell lung cancer patients, showed that those receiving palliative care had a better quality of life, were less likely to suffer depression, and lived longer despite receiving less aggressive care at the end of life, compared with those not receiving palliative care.
A second study found that insured palliative care recipients in hospitals spent less time in the intensive care unit (ICU), were less likely to die in the ICU, and were more likely (together with their families) to elect to enter hospice and receive care at home, compared to a matched group of patients not receiving palliative care.
Many Medical Insurance providers are now getting a better understanding of the concept of palliative care. Robust encouragement by Palliative care teams to Insurers to view earlier and broader palliative care consultations less in terms of clinical benefits and more in terms of cost savings accrued from shorter terminal hospitalization would bring more of them on board with the concept.
Other Studies found cancer patients who died in the ICU or hospital without palliative care experienced more physical and emotional distress and had worse end of life quality than patients who died at home with hospice-provided palliative care. Additionally, family members and the bereaved, suffered more post-traumatic stress disorders, psychiatric illnesses, anger, and disillusionment (usually misplaced), at the hospital system including towards the doctors and nursing staff.
There is evidence to suggest that many patients dying within hospitals receive no specialist palliative care input and do not experience a ‘good’ death.
Hospital-based palliative care consultative teams can help achieve a ‘good’ death as they will assist with decision-making, symptoms management, patient and family support, and discharge planning for those with advanced illness.
What constitutes a ‘good’ death?
A research project from the University of California, San Diego School of Medicine, reviewed available material that examined what constituted a good death or dying well. They found that 11 areas were associated with dying well. A common thread was a patient’s desire to die on their terms.
The three main desires were:
- Ability to give specific information as to how they want to die.
- Being pain-free
- To experience emotional well-being by addressing the quality of life they wanted in their time before death.
Other factors that were included in a good death were religion or spirituality, and, having a sense of completion of their lives. The dying wants the ability to make choices in the treatments they receive, be treated in a dignified manner, and have good relationships with their treatment providers. Being with family members and saying one’s goodbyes is also important in a good death.
Some believe that calling a death “good” is a value judgment that might not necessarily belong to the patient. As a result, a newer model for working with the dying has been developed. It is referred to as a Respectful Death. In this case, the dying, the family, and professionals all work together and support each other to improve end-of-life care and achieve the best possible outcome for the dying. The assumption that all are working together for the best possible outcome is sometimes sadly not the case.
Decisions may be made unilaterally without necessarily considering what the dying wants or needs. Either way, a respectful or good death involves truly listening to the dying and being open and honest with the patient and his family about the diagnosis and future.
Finally, the new Palliative care team at The Nairobi hospital will emphasize compatibility with parallel treatment plans, involve the patient and his community of influencers, and most importantly will not threaten provider autonomy.
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