Mr Chahine
Mr Chahine case study interviews
Background
This is an elderly Muslim gentleman with MND. He left formal schooling at 13. Mr Chahine is a first-generation migrant; he came here from Gujurat, India and became an Islamic religious teacher (imam). He speaks Gujarati as a first language and has been interviewed via an interpreter. He has an Indian wife and three sons and a daughter, the eldest son being the one to whom the parents turn in the first instance for support in any health-related matters (e.g. speaking to HCPs).
Living arrangements
Mr Chahine and his wife live independently in a bungalow. They moved when Mr Chahine could no longer manage stairs well and now live a little further out of their community. Their elder son, who is their first point of contact if needed, lives on the other side of the city.
Understanding of end-of-life care planning
Mr Chahine has never spoken to any HCPs about his future care or EOLCP. He did not want to broach the subject of the future and what will happen as his health deteriorates. He is not ready to talk about EOLCP yet.
Experience and expectations of treatment
Treatment appears to be around management of his condition and the limits to his mobility.
Expectations for the future/goals/values
Mr Chahine wishes to stay in his house for as long as possible, although he has not communicated this to anyone other than his wife.
Health-care professional’s perspective
Mr Chahine’s nominated HCP is a specialist nurse for people with MND. She only sees him every 3 months as his illness is progressing slowly. The HCP had discussed DNACPR with Mr Chahine and tried to talk to the eldest son about this, especially as Mr Chahine had more or less come round to the idea of having a DNACPR instruction in place; however, the eldest son felt that he should consult his siblings to check this. They seemed to see the logic of having this though. The HCP, however, feels that the discussion came up only because Mr Chahine had a chest infection; it may not have been discussed otherwise.
Key observations and emerging issues
Knowledge of illness and prognosis
Mr Chahine does not know the name of his illness, but can talk about its effects on his mobility and the care that he needs. He is also aware that in time he may also experience problems with his throat, which by the third visit with him, had become apparent as he was struggling with swallowing. Although he stated that his health was deteriorating over the course of the interviews, he did not want to think about what will happen as he gets worse.
Choice and decision-making (who is involved?)
Mr Chahine stated that any decisions made about treatment and future care would be based on a joint decision between him, his wife and son. Mr Chahine’s son stated that, ultimately, any decisions made were his dad’s decisions, but that he himself would also speak to his siblings before anything final was in place.
Discussing end-of-life care planning with others (do not attempt cardiopulmonary resuscitation)
Mr Chahine’s HCP had discussed DNACPR with the him and tried to talk to the eldest son about this, especially as Mr Chahine had more or less come round to the idea of having a DNACPR instruction in place; however, the eldest son felt that he should consult his siblings to check this. Mr Chahine’s son explained that his dad had been confused about what DNACPR meant and, once he had explained this to his father, he had decided against this. Mr Chahine’s son also said that he had checked if DNACPR was actually feasible Islamically with a scholar who was an educated mufti (a Muslim legal expert who is empowered to give rulings on religious matters) and the mufti had confirmed that there was no reason Islamically why his father could not have a DNACPR instruction in place in the future. Mr Chahine decided not to sign a DNACPR form.
Faith/spirituality and culture
Mr Chahine is a hafiz (i.e. he has memorised the Qur’an). Faith appears to have been a part of Mr Chahine’s career and remains a big part of his prayer life. He prays five times a day. His wife helps him with ablutions. Mr Chahine’s wife’s desire to care for her husband herself is also, to some extent, rooted in faith. Mr Chahine does not feel that faith necessarily guides his treatment decisions; however, he does refer several times to how god is helping them (with good neighbours, helpful people in shops, etc.). Although nothing (regarding accepting treatment and care) has been completely ruled out on the basis of culture/religion, it is possible that any future outside personal care support given to Mr Chahine may also need to reflect appropriate timings (carers to arrive at sunrise and sunset because of prayer times) and methods (of correct washing to prepare for prayer) that are in line with religious requirements.
Family support (duty)/extent of family support
Mr Chahine’s wife feels a sense of duty to care for her husband: as her wifely duty, religiously, it is better if she cares for her husband rather than passing this over to others. She has struggled to handle him physically and also wheel him around in the wheelchair, but she is determined to care for him. Another reason given for not wanting carer support was because she wanted to do it herself, as it gave her a ‘sense of purpose’, she would not have anything to do if she did not care for her husband; she would become unwell if she did not keep active.
Ethnicity-specific issues (community pressure)
Mr Chahine’s son mentioned that he and his brothers have been judged by the wider community (namely his mum’s and dad’s friends) who question how much they do for their parents; he gave an example of his parents’ friends asking him if he had got the correct walking frame for his mother and also why they had not got personal care for his parents. This added ‘societal pressure’ to be seen as doing everything you can seems to add to the carers’ burden.
Personal reactions and stances (independence and dignity)
Independence and dignity are key for both Mr Chahine and his wife. Mr Chahine’s son stated that culture was a key reason in his parents not wanting to seek support outside the family. Both want to remain independent for as long as possible, and are sometimes reluctant to seek help. Particularly with personal care, Mr Chahine’s wife feels that she should do it and that is her ‘personal’ choice and also duty (see above). Mr Chahine’s HCP suggested that this seems to be frequently the case with other families, not just for this family or based on cultural norms.
Mr Chifamba
Mr Chifamba case study interviews
Background
Mr Chifamba is a middle-aged man with cancer who came to UK from Zimbabwe to study and then to work as a mental health nurse. Before the illness, Mr Chifamba lived on his own. Mr Chifamba’s mother came to look after him, but after the 6-month compassionate visa expired, she had to return to Africa as immigration refused to renew it, even though her son still required care.
Living arrangements
At the time of the interviews, Mr Chifamba was living with his mother in his house. During the follow-up interview, the patient stated that his mother’s compassionate visa had expired and she had been asked to leave the country. She was planning to go back to Africa.
Understanding of end-of-life care planning
Mr Chifamba appears to understand EOLCP, but does not necessarily engage with it. In the interviews, when Mr Chifamba was asked about this, he mostly talked about his post-death wishes and financial preparations.
Experience and expectations of treatment
Mr Chifamba had mixed experiences when it came to treatment. It took HCPs a long time to determine what was wrong with him. For a long time he kept visiting the hospital; they would check him and say they could not see anything wrong with him. He feels disappointed and frustrated that it took so long to diagnose him with end-stage cancer. All this experience made Mr Chifamba lose trust in hospitals and also question whether or not they had his best interests at heart. He decided to put in a formal complaint about the way he was treated.
Expectations for the future/goals/values
Mr Chifamba has trouble seeing past his present situation when he talks of cancer not being in the agenda of his life. He expresses further frustration that he was told he was no longer fit to continue working. His narrative implies a life invaded by cancer and unfulfilled potential and promise. He says one of the hardest things to cope with is his own expectation of life and struggling to figure out the future in his present condition. Mr Chifamba’s mother made it clear that death, dying and EOLCP are topics he would refuse to discuss. In her opinion, she does not want to entertain any negative thinking by engaging in EOLCP discussions.
Key observations and emerging issues
Resistance to end-of-life care planning discussions
Mr Chifamba’s mother prefers not to talk about EOLCP, as she sees it as having a constant reminder of your ‘death penalty’. She says it is common sense for someone to be prepared about any eventuality in life. She says it is normal that people are born and die; thus, it is automatic that people have learnt and will be prepared when someone dies. She says things to do with death come automatically and people do not have to be reminded all the time about the death penalty. If this happens, people are wired to be able to handle this automatically and it need not be a topic for discussion.
Lack of trust
Mr Chifamba does not trust HCPs because of his past experiences and delay in diagnosis.
Ancestral roots
Mr Chifamba was born in Zimbabwe and wants to be buried there.
Culturally inappropriate
Mr Chifamba’s mother does not think it is culturally appropriate to discuss dying and death, as it may then happen sooner. Such discussions in her culture are not done and she views it as a Western style to discuss such things. Talking about death and dying takes away her morale and hope.
Religion and spirituality
Mr Chifamba’s mother talks a lot about her Christian values, saying that it is god who determines things, implying decisions should be made in consultation with him, following his guidance.
Immigration issues
Mr Chifamba’s mother was planning to return to Africa even though her son still required care.
Mrs Curkovic
Mrs Curkovic case study interviews
Background
Mrs Curkovic is an elderly Serbian lady who has a diagnosis of cancer. She also lives with dementia, so her youngest daughter was the consultee for Mrs Curkovic’s participation in the study. Mrs Curkovic is Serbian, was born in Croatia (formerly Yugoslavia) and migrated to the UK with her husband. Her husband died some years ago, rather suddenly. Her religion is Serbian Orthodox; Mrs Curkovic was able to speak English and had worked in several roles until retirement, but with the onset of dementia and less socialisation when she ceased working, she reverted back to her mother tongue. Her daughters interpret for her in all situations, even staying in hospital with her to do this.
Living arrangements
Mrs Curkovic is cared for by two British-born daughters. One of her daughters gave up work in January 2019 to care for Mrs Curkovic and the other reduced her working hours to share the care. Mrs Curkovic’s daughters see it very much as part of their culture that they care for their mother; being placed in care elsewhere would be countercultural and the last thing their mother would want. Mrs Curkovic is cared for at her own home and also at her youngest daughter’s home. This daughter also acts as a consultee for Mrs Curkovic.
Understanding of end-of-life care planning
The family have spoken repeatedly of home as their preferred place of care/dying. They acknowledge that things may deteriorate and that other care may become necessary, although they are determined that will not be in hospital, because of previous poor experiences of care there. The daughters have now signed a DNACPR form, although they agonised over this, feeling that they were signing their mum’s ‘death warrant’. It is hard to know whether or not Mrs Curkovic understands EOLCP except as far as her daughters try to ask their mum’s opinions on matters such as where she wishes to be cared for. It is not clear whether or not Mrs Curkovic would wish or be able to consider elements of her EOLC to plan DNACPR and place of care. Initially, Mrs Curkovic’s daughters feared that signing a DNACPR form meant that no care would be delivered to their mum in the event that she deteriorated. This was wrapped up with the emotional aspects they felt about ‘giving up’ on their mum. After being given time and space, they felt able to embrace the notion of having a DNACPR instruction in place.
Experience and expectations of treatment
The family (and possibly Mrs Curkovic) accept that there will be no further treatment for cancer except medication to manage symptoms. Mrs Curkovic is also seen in a primary care setting regarding dementia, and her daughters speak very positively of care received from the GP/practice nurse. The family’s experience in an acute/hospital setting has, however, been a cause of upset (harsh explanation of her illness in a very public area, abrupt questioning about DNACPR status). This has framed their future care expectations: they hope it will be possible to deliver future care at home or in a hospice.
Expectations for the future/goals/values
Care at home for Mrs Curkovic is desirable for as long as possible, with hospice a second-choice alternative; they hope to avoid hospital care indefinitely. This is partly related to poor previous experiences, but it is also derived from their cultural outlook to care for Mrs Curkovic within the family. Mrs Curkovic’s daughter explains that, as her mother has close family, it is ‘an alien concept’ to have outside carers to help, as culturally it is anticipated that, if you have family, the family will look after you. The wider family agree wholeheartedly with this and support Mrs Curkovic’s daughters in taking care of their mother themselves. Mrs Curkovic’s daughters are keen to have all the medical input possible to keep Mrs Curkovic going for as long as possible and palliative care to keep her comfortable and pain-free in later stages. They believe that this is what Mrs Curkovic wants, although she does not say this directly owing to her living with dementia.
Health-care professional’s perspective
There were two key aspects to Mrs Curkovic’s HCP’s account of supporting this family. First of all, she oriented to the fact that she had built a good relationship with them by taking the time to get to know them and, of course, to know Mrs Curkovic. She felt that building that rapport was very important to be able to introduce and discuss other things, namely EOLCP. So, for this HCP, knowing Mrs Curkovic was paramount and it paved the way for potentially tricky/sensitive conversations. Mrs Curkovic’s HCP felt that she needed to wait until the family was in the right space for this to be broached, giving them space to think it through, and she felt that that preparation work paid off. Second, Mrs Curkovic’s HCP expressed some concern about whether or not the patient’s voice had been fully heard. Although she knew that Mrs Curkovic’s daughters had their mother’s best interests at heart, she expressed concern that, as they always interpreted for her, HCPs could not be absolutely sure that any messages or discussions were being passed on verbatim or if they were being changed in translation. Mrs Curkovic’s HCP described the daughters as ‘gatekeepers’ to what Mrs Curkovic was being told, and, again, although she had little doubt they felt that they were doing the best for their mum, the HCP could not be sure whether or not the patient’s voice was being heard. This was quite tricky to navigate for Mrs Curkovic’s HCP.
Key observations and emerging issues
Case uses a consultee
We do not hear from Mrs Curkovic directly. Her family are the only interpreters, which concerns HCPs as they cannot be sure that they are hearing the patient’s voice.
Patient autonomy
Mrs Curkovic’s diagnosis is intentionally being kept from her, as her family believe it to be in her best interests. HCPs are concerned as to whether or not they are reaching their patient, which produces some very uncomfortable situations for all involved.
Compromised communication
Owing to dementia and language barriers, there are issues around Mrs Curkovic’s daughters as interpreters and as ‘gatekeepers’.
Daughters as experts
Fluctuating capacity affects decision-making, which is completed mainly by Mrs Curkovic’s daughters. Mrs Curkovic’s daughters claim to know their mother completely and want the best for their mum (even seeking guidance from older generation relatives); still, their opinions about what is best are brought into question.
Family takes care of their own
This is what is culturally expected, but can lead to carer burden.
Examples of good practice from primary care health-care professionals
Based very much on principles of building relationship and knowing the patient.
Examples of poor practice
In the hospital setting, Mrs Curkovic’s daughters were almost ‘hounded’ about DNACPR status; the daughters were delivered shocking, unknown news in a very public place and way.
Cultural/religious aspects
The family follows cultural norms of taking care of family; they see it as a natural part of their culture. Mrs Curkovic would anticipate this care and they are happy to provide it. Certain observances of the Serbian Orthodox tradition are important to Mrs Curkovic’s EOLC/EOLCP. The family have a great deal of respect for previous/older generations’ ‘wisdom’ about what is right to do. They have sought advice from Mrs Curkovic’s relatives abroad to support/guide their decision-making in Mrs Curkovic’s best interests.
Ethnicity-specific issues
Mrs Curkovic’s daughters have tended to keep a lot to themselves about their mum’s illness; some of this is explained as being because, in some cultures, dementia/illness is frowned on. This explains, in part, their wanting things to be kept private and why they do their own interpreting. This exposes something of a tension: the family interpreting is desirable for privacy, but can possibly create a gatekeeping effect for HCPs to access the patient voice.
