Dr. Dave Fearon is the Cairdeas Medical Director for the Sahara region.  In this blog, he shares a fascinating insight into his work in Mauritania and the cultural differences that impact palliative care there. 

“We at Cairdeas Sahara take a holistic approach to our patients. In addition to caring for their physical needs, we try to care for their social, spiritual, and emotional needs. As palliative care develops in Mauritania, we also acknowledge the need for a holistic approach to building capacity long term. It is not OK to just care for a few patients located in the capital and ignore the suffering of others. Therefore, we have an approach which incorporates training, advocacy and research. We are pleased to announce that we have recently had an article published in the respected Anglophone journal ‘Palliative Medicine’. This article is based on research that ran parallel to a national palliative care capacity building program sponsored by Tropical Health Education Trust (THET) and Johnson & Johnson, between 2016 and 2017.   I would like to tell you about the study - the participants and results:

The participants: We carried out interviews and focus groups with 76 research participants recruited from across rural Mauritania. These included 33 out of the 75 health care professionals trained in palliative, 12 recently bereaved family members and 31 community leaders.  

Results: Overall, we found that the principles of palliative care were warmly welcomed by everyone involved. But it was often the family with direct experience of losing someone who most valued what we were proposing. In the article we discuss the following:

The strong belief in destiny leads people to believe that illness only comes when God decides it, and that the person will die only at the date, time, and manner of God’s choosing. This view is based on a different perspective of human-God relationship than is found in Christianity. Death is not related to an illness, and therefore participants struggled with the idea of a life-limiting illness upon which palliative care is founded. 

Doctors and nurses really struggle with communication regarding palliative care. In the past we have tried to train doctors and nurses in sensitively breaking bad news, such as a diagnosis of cancer or when it has to the bones. However, our research has illustrated how the problems with communication are much more fundamental. Doctors and nurses often provide no information, or misleading information. They fail to communicate the diagnosis or its treatment, irrespective of whether it is a simple, time-limited illness or a life-threatening illness. 

Religious faith and cultural practices combine to create a uniquely Mauritanian perspective of a good death. No one is sure of where they will go after death and so the family try to look for reassurance and ways to increase the chances of their loved one getting into paradise.  This occurs during life and after death, for example the family paying off any remaining debts left by the deceased.

This new knowledge and awareness has already been incorporated in how we train doctors and nurses in palliative care, and how we care for patients and their families. We are pleased that the nurse NDiaye, the champion of palliative care in Mauritania, was part of the writing team on this article. This will be his first academic publication and is a good start as he takes on more responsibility for the palliative care project over the coming months.”

My name is Esther Nantongo Muyinga, I am a Registered Nurse currently pursuing a degree in palliative care and at the same time working in Mulago National Referral Hospital, Kampala, Uganda, in the palliative care unit.

Before joining the palliative care unit, I used to work on the wards and I used to come across patients who were challenging in their management, they had complex issues.  Little did I know that the patient is supposed to be managed holistically to achieve quality of care and quality of life.

According to my experience before and after working with palliative care team, I have learned that when a person falls sick, it is not only physical body which is sick but that patients also tend to have other issues surrounding their sicknesses.  If these are not addressed, it can be even more challenging for their health to improve and for healing to occur. 

During my practice I have witnessed patients who don’t want to be discharged, even though the medical personnel may feel they are ok.  And I have witnessed other people who change their faces to look like they are very sick when they see a Nurse or a Doctor coming in.  One person has even whispered to me, ‘talk to the Doctor not to discharge me’ and another one requested me to admit her.  All these circumstances mean that there issues that need to be addressed; issues that might be called psychological, psychosocial, and spiritual. My understanding about this grew after joining the palliative care team.

Have you ever wondered, why after giving a strong analgesic a patient may still remains in much pain?  Or have you ever witnessed a patient who cries in pain after seeing a medical person, yet before he/she was conversing well with fellow patients.  Both might mean there are unaddressed aspect of their lives.

In 2012 I had an opportunity to train as a link-nurse in palliative care for five days, helping to identify patients with palliative care needs on my ward.  After identifying them, I could manage those at Level 1 – Level 1 being those who had symptoms that were easy to manage.  Those I could not manage (Level 2), I consulted with the Doctor. If the patient’s symptoms were becoming more complex another palliative care team member was consulted (that’s Level 3), and when the team member could not manage alone, the whole team was consulted – which was Level 4.  I did that for for four years.

In 2015 I was brought on board and joined the palliative care team, but I felt that I was depending on the little knowledge and skills.  I had a challenge of not being recognized as palliative care personnel as I had no qualifications to show.  Despite having some knowledge and skills, I feared documenting in the patient’s files.

I thank God for the palliative care team because they have been so encouraging to me in taking this degree in palliative care.  I know I will make it with God on my side.  As of the 7thOctober 2018 I have finished writing examinations for the first semester of the first year.  As I learn, I grow and I know I will be of much help in addressing palliative care needs of palliative care patients.

We do not intend the Global PC Day, which took place on 29thNovember 2018, to have been a talking shop.  We want to learn from it, and we know that those who came along to share and listen and learn, also want to make a difference.  All of us in the field of palliative care seek to ensure that health inequalities between nations are levelled out and, in keeping with the title of the conference, that ‘none are left behind.’

During the day of the conference, between the individual presentations, there were compelling group discussions that continued, informally, throughout lunchtime. Many had flown in specifically for the conference, bringing direct experience of their overseas work to bear.

Where palliative care sits on the pecking order of health needs was a hot potato for some.  In many low-income countries more generalised healthcare and access basic services is prioritised above palliative care.  There was a discussion about advocacy, lobbying and the opportunities arising from both the WHO Declaration and Lancet Commission Report in advancing the case of the palliative care and in raising it to the level of other important primary health care needs.

An ongoing theme was that of holistic care – treating the whole person by understanding their suffering and building a package of care around their stated needs. This is about listening, it’s about piecing together the jigsaw to meet the needs of the person and not simply the illness.  For example, talking about what matters to the person and asking, “what brings your life meaning?”, and then enabling them to do more of what matters to them was felt to be core to good palliative care.

Despite the strides that have been made in recent years in raising the profile of palliative care, one breakout session discussed the need for ongoing awareness-raising and how further understanding needs to be built to support specialisation in palliative care.

Of course, given the global aspect of the conference, the issue of culture was high on the agenda, and many examples were provided as to how different cultures impact on the work of doctors, nurses, social workers and religious leaders. Learning how to tailor palliative care appropriate to the prevailing culture was deemed key.  For example (but by no means exclusively) within the Muslim culture it can be a challenge to discuss and present a prognosis of having a short time left to live.

Models of integration were discussed.  One of those presenting noted that the World Health Assembly set the policy in 2014, but asked, how we might now integrate this into clinical practice?

Delegates left the conference energised and enthused for the future and with increased determination that they would contribute to more equitable palliative care globally. We look forward to seeing both familiar and new faces at the 2019 Global PC Day when it comes around again at the end of the year.