Palliative care is about quality of life at any point during the trajectory of an incurable illness. It is more about life than about death. When the hope for a cure is gone we need to redirect the patient and family's hope for something more realistic and achievable.

Palliative care clinicians struggle with maintaining hope in the face of life-threatening illnesses with poor prognoses. However, can we foster true hope and not false hope or hopelessness in our communications with patients and families? Inspiring hope in ourselves as clinicians also has a healing effect on us and can help prevent burnout and increase resilience to the stressors inherent in challenging work situations. Within the context of communication on prognosis and end-of-life issues, however, we perceive patients’ hope as difficult and sometimes experience an ethical dilemma between maintaining patients’ hope and truth telling, which may diminish hope.

FN was a 28-year-old female, a single mother of a 12-year-old daughter, lying on a mattress on the floor of the cancer ward. Weak and emaciated she was clearly in her last days of life. She had cervical cancer and HIV/AIDS, but despite her illness she smiled as she held my hand. I found it hard to hold back the tears. We chatted for several minutes and she told me that at one time she had a good life but then she was diagnosed with HIV/AIDS and later cervical cancer. Most of her family abandoned her including the father of her 12-year-old daughter. She was suffering not only from physical, but also spiritual pain. She had spent many sleepless nights and kept asking, ‘why me?’; wondering if God cares. Oral morphine was prescribed for her physical pain and was effective in making her comfortable. FN was counseled about her disease prognosis and potential treatment outcomes and we made mutual goals of care. From then she kept saying God loves her and our team were angels from God. For FN, the biggest concern was getting her daughter educated after she died. Thank God we managed to get in touch with the father of her daughter. We met him and he promised he would take full responsibility of their daughter! This was a big relief and assurance for FN. She died peacefully on the ward after knowing that her daughter would get an education, even when she is long gone. Since then I have met many other FNs, desperately poor people with terminal illness who are crying out for help and support. Patients may have more goals and priorities besides living longer. Together we can do more.

NS was a 17 year old female with advanced abdominal tumour who had just completed high school. She suffered severe abdominal pain, distension and vomiting as a result of malignant bowl obstruction. She was the first borne out of 4 and her main carer was her mother, a single parent who converted from being a Moslem to a born again Christian in anticipation for a miracle for her daughter. The mother had spent everything to ensure that the daughter survived and she had now become financially constrained with very little support from the close family. Meanwhile NS’s condition continued to deteriorate. It was at this point that the palliative care team was consulted to see the NS for symptom management and end of life care. Children with cancer commonly suffer physical and emotional symptoms affecting their quality of life and the parents to these children with cancer feel lost and experience emotional conflict because of an inability to accept the suffering and reality of losing their children. Palliative care can improve the quality of life for children and their families. Although in reality, even with palliative care there can be despair and prolonged grief for parents involved and loss of hope. I was able to do an assessment of NS’s physical symptoms and these were very distressing both to the patient and mother. Though very challenging we eventually managed to control these symptoms. This symptom control gave a lot of relief to the mother and gave some hope as she waited on a miracle cure for her daughter from God. We are therefore vital in the continuous assessment and addressing of parents' spiritual needs, with the involvement of family and religious leaders.

Hope for cure has traditionally been the patient’s best friend and the clinician’s strongest ally. Clinicians may avoid discussing their patients’ poor prognoses with them for fear that this might destroy their hopes. However, patients with serious illness usually want to hear the truth from their clinicians and benefit from knowing the facts. By still hoping for a miracle and surrendering to God, the parents show that they cannot be separated from their relationship with God. Amidst a seemingly hopeless situation, I noted that NS's mother became more at peace, with ongoing counseling and support. NS died on the ward but her mother called to thank me for the support saying she was hopeful that her daughter gone heaven. 

My name is Grace Kivumbi and I am the Unit Manager with the Palliative Care Education & Research Consortium (PcERC) & MPCU based in Kampala, Uganda.  So where do I start in telling you about my role?  There is so much, and every day is different!  What I am about to recount is not exactly a typical day, as this would be too much to pack into one day, so let me describe what might be a typical week or a month for me…..

I suppose the most important thing is for me is to keep the daily operations of the office up and running; I am supported by an administration assistant to do this.  Finance is a big part of the role as I keep on top of budgets for both PcERC and the Makerere & Mulago Palliative Care Unit (MMPC). There are lots of requisitions to complete as I ensure we stay accountable for all of the activities and projects we run, and there are so many statutory requirements that I have to make sure are met.

I am a ‘people person’ so whilst I do lots of behind-the-scenes work in supporting staff recruitment, contracts and appraisals, I love it when I get to work alongside people - I enjoy the camaraderie and support.  For example, I have a colleague based in the UK (the Cairdeas Operations Director) and I enjoy it when we have Skype calls to work out issues regarding reports or finances. I like to collaborate, so this suits me, and although email is great it is even better to see someone’s face and connect that way!

You could say I keep other people moving!  I mean this in so far as I provide logistical support for international placements in the unit, including flights, travel and accommodation.  For example, when we have young doctors coming from the UK to do work placements here in Uganda, they are coming for anything from between two months to one year and, understandably, they have lots of questions about the culture, customs and practices, as well as the practicalities.  I try to be available to answer all of their questions! Support ranges from helping with preparation for visas, arranging for them to travel from the airport to where they are staying, obtaining work licences and settling down to work with the team.  It is lovely when they arrive and I am finally able to meet them.

Lots of my work is alongside the Cairdeas Medical Director, Dr. Mhoira Leng.  Dr. Mhoira is very dynamic and energetic and she travels extensively throughout the world and I help with her travel plans and bookings. I sometimes wonder where she gets her energy from! I provide financial support to Dr. Mhoira including predicting monthly costs for international travel, advance requisitions and accountability.  

There is a group called ‘The Cairdeas Faculty’.  This is a group of professional volunteers who are linked to Cairdeas to create a pool of expertise, and who are available to support the work of Cairdeas and other partners through mentoring, training, curriculum development, capacity building and clinical work to facilitate the growth of palliative care.  Whenever faculty members travel to Uganda I am often called upon to helpsort out the logistics including organising their airport transfers, accommodation and local travels. 

We are lucky enough to manage some grant funding from National and International donors and grant makers for various projects, fieldwork and research.  My work is kept interesting as I participate in both the grant writing and in the narrative reports that we send back to them to update them on progress and its so rewarding when our work and efforts in improving the quality of life of patients are families under our care is appreciated by those that support us. 

One of the roles I am quite proud of is that I am currently champion for the American Cancer Society SOURCE - Strengthening Organisations for a United Response against the Cancer Epidemic.  This is a program aimed at strengthening organisations in the different areas of organisation development and the role of the champion is to act as an internal change agent in the organisation.  I am learning a lot from being part of this.

Of course, as with life in general, things at work can be unpredictable and sometimes precarious. Right now MPCU & PcERC are going through a hard time with funding, and we are energetically seeking donations to support our vital work. We are determined to keep planning and keep going in the face of hard times for the sake of those who rely on us, and I am keeping on top of our work plans and continuing to budget for the future of the Unit.

In March 2019 PcERC is launching an important fundraising campaign under the slogan - #bringinghope - this is really important for our future work and sustainability and we hope you will look out for it next month a consider supporting us. 

I am so grateful for those of you reading this who have helped MPCU and PcERC to date and to those you who might be moved to help us in the future, thank you. 

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.