Cairdeas is pleased to be a member of the Scottish Partnership for Palliative Care (SPCC). We firmly believe that networking, sharing, collaborating and learning together is the best way to promote and advance better palliative care for all.  Whilst the focus of the SPCC is largely within Scotland, they regularly reach out to their neighbours within the UK, and to partners working internationally – such as Cairdeas - to learn about best practice and case studies from throughout the world.  

We were delighted to have a number of Cairdeas delegates attend the SPCC’s annual conference, which took place in the Royal College of Physicians in Edinburgh in November, and to share the word about what we do via an information stand that we had on the day. It was a wonderful opportunity to meet faces old and new, and to hear fresh thinking from those who study and work in palliative care.  

Chief Executive of SPCC, Mark Hazelwood, chaired the day, and kept delegates on their toes by using interactive technology to collect the names of a song or piece of music each of us would like to have played at our funeral.  A dizzying array of songs and artists (from ABBA to Led Zepplin, Ave Maria to Bohemian Rhapsody) appeared on the screen behind Mark, which immediately set the scene for a day that was focused on the personal: a day of stories. Each of the speakers had his or her own unique take on the conference title: “The Sense of an Ending: stories, meanings and understanding.”

Kristian Pollock, Professor of Medical Sociology at the University of Nottingham, opened with a challenging presentation that was based around her qualitative research on end of life care.  She gently challenged the notion of a ‘good death’ and reminded us to not to use the term as a whitewash or to use it to paint a picture of death through rose-tinted spectacles.  Of course, we ought to all seek to have a ‘good death’, but we might be building unrealistic expectations if we do not also acknowledge the hard decisions and unanticipated feelings.

Christian Busch, Hospital Chaplain in Rigshospitalet, Copenhagen told us that, in his experience, people at the end of their lives often aren’t seeking answers but are seeking presence: a witness, someone to be there with them.  His presentation drew on the work of Søren Kierkegaard, Danish philosopher, theologian and poet whose basis for helping others was: “to take care to find him where he is, and begin there.”  Christianstressed that feeling extreme anxiety at the diagnosis of a life-limiting condition is a healthy and normal response to having lost control of all those things we once had control of.  As a chaplain, he is there with people at the end of their lives to help them look backwards, and to look forwards; to help them identify what brings their life meaning and how to bring what is meaningful to bear in the last days of their lives.

Dr Donald Macaskill, Chief Executive of Scottish Care, also expanded on the importance of the psycho-spiritual care alongside medical care and pain relief.  Scottish Care organisation has almost 1,000 care home/housing support services as members and he had many stories – not least that of his own grandmother - of exemplary care as people die.  Hearing their story, reviewing their life was, Donald felt so important to brining that ‘sense of an ending’ for both those leaving and those staying behind.

This is always an inspiration day and we look forward to the next SPPC conference in September 2019.

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.