What does a 70-year-old widower do when diagnosed with stage four lung cancer and is advised by the doctors not to waste more money on medication?
Does he sit in his backyard reminiscing of the good old days when he was strong, beefy and his flesh not wasted by disease and old age? Does he question a Deity (if he believes in one) on why he subjected him to such slow and painful evening of his life? Or does he battle the physical, emotional and spiritual pain by himself all the while wishing he met his end already?
In an address in Kimironko Sector, behind a modest green gate, sits an office of an organisation whose role, among others, is to see to that the patient (like the 70-year-old widower) who is fading away does so with their dignity intact and painlessly. This is the head office of Palliative Care Association of Rwanda (PCAR).
Derived from Latin Palliare, (which means to cover), palliative care offers a holistic approach to improving the quality of life of mostly terminally ill patients by prevention and relief of physical, social, emotional and spiritual pain.
The association founded by a group of nurses inspired by patients requiring end of life care, came into being in 2010 and comprises of public and private hospitals, Ministry of Health and non-governmental organisations.
Among the milestones they have achieved is being one of the first African countries to develop a local palliative care policy tailor-made to fit the Rwandan culture.
The caregivers consist of visiting doctors, nurses, social workers, psychologists and at times spiritual leaders to see to it that patients are at peace as they deal with the life threatening illnesses.
They don’t see it as steering them to the end; instead they see it as providing a basic right.
“We do not facilitate or shorten the death process; instead we improve the patients’ quality of life for patients with chronic illnesses most of which are painful or cause trauma to the patient. We provide end of life care,” says Diane Mukasahaha, the executive director of the organisation.
Palliative care, which is a relatively new concept in the country, begins in hospitals after prognosis of chronic illnesses and ends with the demise of the patient.
But that is in its archaic understanding. Today, however, palliative care encompasses more than just ‘setting the stage for death of people ailing from incurable diseases’.
Medics today argue that palliative care can help one recover from illness by relieving symptoms such as pain, anxiety or loss of appetite, as one undergoes sometimes-difficult treatment, such as surgery or chemotherapy.
“We conduct home visits once the patients have been sent home and ensure that they are comfortable and at peace with their conditions. We also see to it that the patients’ family is no longer tortured by their kin’s condition,” Mukasahaha says.
From hospice to palliative
Previously, in the early 1950s, palliative care, was known as hospice care–a dying place, but today’s definition has changed to a philosophy of care for patients with incurable diseases. Among the hospitals that offer palliative care in the country include University Central Teaching Hospital of Kigali (Chuk), Kibagabaga Hospital and Gwamagana Hospital in Eastern Province.
Palliative caregivers mostly come across dire cases of advanced cancer or resistant HIV/Aids, which stages are characterised by physical pain and mental torture.
“There are also cases of complicated hypertension and diabetes. Some wonder why God has deserted them. Others keep asking when they will die; it is painful because they are always anticipating demise. Their conditions worsen by the day. But we have to see to it that they die with their dignity and with less pain. We also have to be dynamic because things are always changing,” Mukasahaha says.
Grace Mukankuranga, the organisation’s programme manager, who was among the founding members, says, so far, they have been able to alleviate patients’ pain and provide them with as much comfort as their relatives go about with other businesses.
“Families appreciate what we do for their loved ones and that they are able to go on with their other responsibilities,” she says.
If you have the nerve to look at images of what Mukasahaha, Mukankuranga and others in their line of work deal with on a regular basis, you find that none of them is pretty to look at twice.
After dealing with all these cases, the caregivers, too, need ‘care’. There are programmes to help them deal with and erase the horrific experiences of their work.
“We are trained to handle the pressure individually, some travel, visit friends or do whatever helps them free their minds. Personally, I spend time in church, attend weddings and other personal engagements, it helps take my mind off work,” Mukankuranga says.
Ignorance of the ‘vocation’
For a stranger to take care of your ailing relative as you go about with other chores would underscore some salient service. Yet, thanks to the false perception that palliative care is all about helping those who are dying, many people are ignorant of the works caregivers do.
Yusuf Ganza, a resident of Nyamirambo, appreciates palliative care, but is not sure he would go for the programme.
“I would encourage people to get on such programmes, but, personally, I would be hesitant to get on it since it would be like accepting my oncoming demise. It would be like the same as giving up. It would be the same as packing your bags expecting the much dreaded journey. I have also seen people who are in denial of their condition and refuse to embrace demise,” Ganza says.
But that is a challenge to palliative care, which means understanding it and erasing the image of death that has shrouded this vocation would go a long way in creative the stage for the public to understand care-giving.
Nevertheless, Dr Vincent Karamuka, of Chuk, one of the first hospitals to use palliative care services in the country, says the care-giving mode has a high success rate, adding that he has personally seen the improvement of lives of patients.
“At times, with palliative care, you will observe that when a patient is comfortable and things seem to work out better, they seem to live longer than their conditions indicate,” he says.
For members of the ‘benevolence fraternity’ of palliative caregivers, one wish currently dominates their life.
“We wish for a day when palliative care will be found from referral hospital to healthcare facilities in communities so that many patients can enjoy the basic right. Services and information from us are free,” Mukasahaha says.
world health organisation definition of palliative care
Palliative care is an approach that improves the quality of life of patients and their families facing the problem 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. Palliative care:
l provides relief from pain and other distressing symptoms;
l affirms life and regards dying as a normal process;
l intends neither to hasten or postpone death;
l integrates the psychological and spiritual aspects of patient care;
l offers a support system to help patients live as actively as possible until death;
l offers a support system to help the family cope during the patients illness and in their own bereavement;
l uses a team approach to address the needs of patients and their families, including bereavement counselling, if indicated;
l will enhance quality of life, and may also positively influence the course of illness;
l is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy, and includes those investigations needed to better understand and manage distressing clinical complications.
Palliative care for children represents a special, albeit closely related field to adult palliative care. WHO’s definition of palliative care appropriate for children and their families is as follows; the principles apply to other paediatric chronic disorders:
l Palliative care for children is the active total care of the child’s body, mind and spirit, and also involves giving support to the family.
l It begins when illness is diagnosed, and continues regardless of whether or not a child receives treatment directed at the disease.
l Health providers must evaluate and alleviate a child’s physical, psychological, and social distress.
l Effective palliative care requires a broad multidisciplinary approach that includes the family and makes use of available community resources; it can be successfully implemented even if resources are limited.
l It can be provided in tertiary care facilities, in community health centres and even in children’s homes.
Source: World Health Organisation 1998