A stroll at an infirmary can leave even the strongest of souls in agony. The sight of patients lying on their sickbeds with unspeakable pain is so touching. For those with a caregiver on their side, they bear a glimpse of hope to heal, but what of those who lie with no one on their side to shoulder their pain?
Such unfortunate situations are the reason why palliative care is a necessity. The service entails care for the terminally ill and their families, especially that provided by an organised health service provider. It is an important part of treatment for incurable ailments as it focuses on managing both emotional and social needs.
Experts say that this medical specialty aims at relieving suffering at any stage of an illness and that it is not limited to end-of-life care. Services for this specialty include symptom management, as well as emotional and social support, among others. It is however offered alongside therapeutic and disease-modifying treatments, especially for patients with serious illnesses.
Understanding palliative care
Dr Christian Ntizimira, a physician and palliative care activist based in Kigali, says that palliative care is a fundamental issue and that people should understand that the service is everyone’s business and not only for healthcare providers.
This medical specialty generally focuses on improving life and providing comfort to people with life-threatening illnesses. Conditions such as cancer, diabetes, HIV/AIDS and strokes are some of those illnesses that call for this kind of care.
“It is applicable in the early course of illness and offered alongside other therapies plus other investigations needed to better understand and manage distressing clinical complications,” Ntizimira says.
He points out that when a patient is diagnosed with an incurable disease, their family and community suffer at the same time, the reason why organisations such as Rwanda Palliative Care and Hospice Organisation focus on providing such services at home for continuum care.
Ntizimira explains the care as an approach that drastically improves the quality of life of patients and their families facing the problem associated with life-threatening illness.
“This is possible because of the relief from suffering by means of early identification, assessment and treatment of pain and other problems which can be physical, psychosocial and spiritual,” he says.
Dr Eric Kabisa, the clinical coordinator of Rwanda Palliative Care and Hospice Organisation, also shares a similar opinion explaining that this kind of care works best when it comes to treatment of patients suffering from chronic ailments.
He adds that it also lessens the burden on the side of caregivers as they are also stressed physically and emotionally during this time.
“Palliative care calls for a healthcare team but also caregivers are responsible for several day-to-day tasks, such as giving medication and offering emotional support. That is why providing support for caregivers is another important goal of palliative care,” he points out.
“It is a multidisciplinary service that involves doctors, nurses, social workers, psychologists and the family itself. All these people come and work together when it comes to providing this service,” Kabisa adds.
He explains that the service can be given either from hospital, home or from a hospice where one is closely monitored.
Relevance of this care
Dr Ntizimira says that other than the treatment, patients need psychosocial support which is very important for their families as well.
He explains that palliative care gives a platform to offer a support system towards patients in order for them to live as actively as possible until death by affirming life and regarding death as a normal process.
“This care uses a team approach to address the needs of patients and their families, including bereavement counseling. This helps enhance the quality of life and may also positively influence the course of illness,” he says.
Research from the National Cancer Institute indicates that palliative care and its many components are beneficial to the patient and family well-being.
It cites a number of studies in recent years showing that patients who have their symptoms controlled are able to communicate their emotional needs and have a better experience with their medical care.
Studies show that patients who don’t have access to palliative care are less able to adhere to their treatment and manage their illness and health when physical and emotional problems are present.
Kabisa notes that patients have a lot to benefit from this kind of care, more especially cancer patients who have to endure immense pain.
“Pain management is one of the areas palliative care focuses on. Being supported socially, especially seeing that such patients are sometimes isolated, is helpful and ensures that patients are relatively comfortable until they breathe their last,” he says.
“Patients who are given home-based care are saved from the trouble of the daily routine of visits to the hospital because everything is done from home be it medication or any other services the patient needs,” he adds.
Kabisa says not so many Rwandans are aware of this kind of care, and therefore calls upon both the government and private stakeholders to create more awareness about it.
He says that more hospice and palliative care homes need to be established to ensure better patients’ welfare.
“The government is trying to create awareness and give trainings, but I also suggest that more stakeholders join this cause. Just like there are many organisations for HIV, more for palliative care and hospice are also needed because there are patients who are in their homes or even in hospitals waiting to die without a person to help them through this very trying time.”
Experts share tips
Janvier Rusizina, medic at La Nouvelle Clinic in Remera
Although palliative care is not given in most cases, patients always need someone to be close to them who can counsel and advise them about what they are going through. This helps to ease the pain as they can also share what they feel and what they think should be done. Finding a trained palliative caregiver is also important as they know how exactly to handle such cases.
Raymond Awazi, pediatrician
A child getting palliative care needs a lot of love from their parents or caretaker to get relief from the pain they could be going through. Apart from just improving the quality of life for the kid, palliative care also gives relief to the entire family. Children should particularly be closely monitored to ensure they get all they want.
Iba Mayale, gynecologist
The Ministry of Health should try to at least to deploy palliative care professionals in every district hospital. However, there is still need to train more professionals in this field so that patients can receive quality care. All nurses and doctors should have some knowledge on palliative care on top of administering drugs.
Ivan Ntwari, medic
Palliative care personnel should be in a position to respond to anger, provide comfort needed by patients as well as be in a position to respond to the family and even resolve conflicts that might arise due to these sicknesses. They should also be in position to provide psychological support to patients.