Dying from cancer in developed and developing countries: lessons from two qualitative interview studies of patients and their carers

Analysis

We analysed results throughout the fieldwork to allow emergent themes to be fed back into the data collection. These themes and the research questions formed the basis of the coding strategies. We used the qualitative computer package QSR NVivo and the techniques of narrative analysis.12 At both sites transcripts and field notes were checked and coded by two experienced researchers. In Kenya, aware of the role of language in determining as well as describing social constructs, a multidisciplinary advisory group, assisted by the nurse interviewer, discussed evolving themes and key Kimeru phrases.13 This group, most of whom were native speakers of Kimeru who were also fluent in English, included doctors, teachers, nurse trainers, and community health promotion workers, who brought a wide range of research, education, clinical, and local community perspectives to the analysis.

In Scotland the multidisciplinary steering group, which included hospice and hospital based community medicine specialists, a social worker, a nurse, and a general practitioner, regularly discussed the evolving themes and contributed to data synthesis and interpretation.

Living with cancer in Scotland

Patients and their carers in Scotland were predominantly concerned about the prospect of death. “The doctor told me that you're actually on borrowed time with cancer … They're hoping to shrink this cancer in the right lung, but you're more or less a time bomb” (patient 1). “You're wondering if you're going to see tomorrow. When I first was told, that was the first thing that went through my head, How long? When?” … it's been like going to hell and back” (patient 2).

Patients struggled to maintain a normal life while swinging, often in the same day, from hope to despair. They tried to remain positive, but frustration and anger were evident. “Sometimes I just want to throw the best china at the kitchen wall, but then you just have to grit your teeth and get through it. The only thing is to try and lead an ordinary day” (patient 3).

Patients often felt unable to share their distress with family, friends, or professionals. “I just keep that to myself. And then I think, just get up girl and show them different; different, determined, positive. And then other times I just sort of weep into it. You can only do so much” (patient 1).

Only occasionally did religion provide comfort. “Some days we'll receive prayer cards, signed by the priests. I like that. It shows they're caring. I like to know that I've got all these people praying for me—even people I've never met” (patient 4).

During radiotherapy and chemotherapy, regular hospital visits dominated the lives of both patients and carers, giving support and hope. “The oncology people, I mean, they get to know their patients so well, you know. They, they know them so well, don't they? They're great nurses and departments, eh, specialists … They're so caring” (patient 5). However patients had to deal with treatment side effects. “Yesterday I just wanted to curl up in a ball and die, but I know that's not the cancer. That's the treatment. The treatment makes you feel so bad, and each time the after effects have lasted longer and been worse” (patient 3).

Patients worried about how carers would cope. “I feel more for my wife and family. It's strange. You hear people saying that, and I never thought it was true, but you do worry more about what's going to happen to them” (patient 6).

Carers worried about upsetting the patient and about how they would know what to do when death did occur. “Sometimes I wonder, Is this the end? and then I think, what will it be like, you know? How will I know? And will I know? And what will happen? And I just don't know … the next time the hospice nurse comes, I'll ask her. So I get myself all braced up to ask her, but when she actually comes, I just can't do it. Perhaps I don't really want to know” (carer of patient 6).

Living with cancer in Kenya

In Kenya, pain dominated the experience of living with cancer. The pain was constant and unbearable for many. “There are times when the pain is so severe that I feel like hanging myself in the house to die” (patient 7). “I want to go to sleep and wake up dead because the disease may take a long time, and I will have to suffer a long time” (patient 8). “I would like to die rather than live as I am living” (patient 9).

Many patients could afford neither analgesia nor basic essentials for care. “There is no money in the family, because of the many times I attended dispensaries and did not get well” (patient 10).

Degrading material circumstances were sometimes evident. “There were faeces on her body, urine stinging her wounds. No one in the family felt able to wash her. Her daughter was overwhelmed by the smell and look of the wounds” (fieldnotes concerning patient 11).

Some patients tried to hide their illness from their families because “they would be disturbed as this disease needs money” (patient 12). All worried about finding the money to attend outpatient consultations, pay hospital bills, and buy medicines. A constant task for many was “searching for money and never getting it” (patient 13).

Patients were accepting of their prognosis and the inevitability of death and were rarely angry at the illness. “There is nothing that being angry can achieve” (patient 12). “Death is a path we all must tread” (patient 7). “Do the maize and beans ask the harvester where they are going to be stored?” (patient 14). All believed the time of death was not theirs to control. “We belong to God and he will take us away when he feels it is right, when he wants” (patient 15). Religious beliefs often provided comfort and peace. “God comforts me; my heart calms down when I remember this and I get emotional support” (patient 7).

A diagnosis of cancer brought an end to searching for a cure and signalled a time of preparation and waiting rather than intensive treatment. “I must simply wait until God calls me home, there is no chance of getting better, so all I have to do is to wait until the home calling” (patient 11).

Although the cultural norm among this ethnic group is for the extended family to care for their ill, patients often thought they were becoming a physical and financial burden to their family. “Money is being spent on me instead of school fees” (patient 16). “At home there may be only one person to care for you and the farm, the animals and other things” (patient 12).

Carers described being burdened by the difficulty of caring, their lack of medical knowledge, the lack of drugs in the home, and their fear of not knowing what to do when the patient deteriorated. If the patient died they were anxious about handling the body and either preserving it until the time of the funeral or arranging and paying for transport to a mortuary.

Health care in Scotland

Patients had access to support and effective analgesia at home. “There's a district nurse from the new surgery who comes in every two weeks, just to maintain contact. She's lovely and, in fact, she knows other members of our family and so we've been very lucky with her. She's a really nice person and easy to get on with” (patient 17). “They gave me like morphine, you know, a substitute of morphine, I was supposed to take 4, 4 or 5 times a day for pain, but I don't really have any pain, so I don't really take it” (patient 1).

Help with mobility, equipment, and financial benefits were usually available, as were carers' support, sitting services, and some respite care. Specialist palliative care services offered support at home, day care facilities, and hospice admission, which only some people used. “I wouldn't know what I wanted counselling on, why I'd want to phone her up … unless it gets really bad” (patient 5). Cancer charities and voluntary agencies offered many services.

Health care in Kenya

Medical, nursing, or social services were not available in rural homes in Kenya. Volunteers with training in palliative care were not available locally. Opioids were available only to hospitals with a specific prescribing licence. Cancer patients were invited to report back to the hospital until they were physically unable to do so. Radiotherapy was costly and available only in cities, and there was a long delay. The work of attending those who were vomiting, incontinent, or who had offensive wounds strained patient-family relationships. Most homes had neither running water, indoor toilets, electricity, nor easy access to gloves or dressings. Specific local cultural traditions prohibited sons and daughters from seeing their parents naked. “There are parts of the body that you cannot show to your family members. There are some people who should not touch you” (patient 18).

While physical needs were better met in hospital than at home, patients thought that there was less emotional and spiritual support in hospital. Surrounded by sickness and unable to see their children or their land and animals, patients felt isolated. “In hospital, death and illness surrounded me; the smell of drugs was ever present” (patient 16). “No one takes me out for sunshine” said patient 19, who longed for home, “At home I can see my hut and my garden.”

In the community, voluntary groups such as church fellowships helped patients cope with their illnesses by visiting regularly, singing and praying for the person, and carrying small essential gifts such as food or soap. Patients valued these visits. The husband of patient 8 explained, “She remains firm by the church praying for her, then she turns to prayer and finds herself relieved of the pain and falls asleep.” Patients described how this support encouraged them to feel part of the community despite their illness and helped them retain a sense of value and meaning in their lives.

Conclusions

Though living in a resource rich country with cancer a national priority, Scottish patients described unmet psychosocial needs. Meeting physical needs did not alone ensure a good death. In developing countries, while physical needs often go unmet, the family and the local and religious community can and do meet many of the psychological, social, and spiritual end of life needs: “higher order” needs can be met amid physical distress, everting Maslow's typology of need.22

In the West, the palliative care movement has succeeded in improving pain control. For humane end of life care in Africa, an analgesic “ladder” must be available and affordable. Flexible methods of essential drug dispensing, distribution, and payment should be developed, which recognise poverty in patients. There is now an opportunity and an imperative to assist developing countries. A way must be found to improve the physical care of dying people in Africa without destroying the capacity of the patient, the family, the community, and religious organisations to meet other needs. Western medicine can learn from developing countries to empower patients, families, and communities to accommodate the distress of the dying.