(pictured: hospice social worker Roy Nightingale)
A social worker discusses a case in which a man with only a few weeks to live is unaware of his diagnosis
PRACTITIONER: Roy Nightingale, social worker.
FIELD: Hospice social work.
LOCATION: St Joseph’s Hospice, Hackney, east London.
CLIENT: Peter, 74, lives with his long-term partner Dee*, 71.
CASE HISTORY: Peter has only a few weeks left to live. Having spent several weeks in hospital, he is allowed home with an oxygen supply and hospital bed. Unbeknown to him, his doctor has diagnosed mesothelioma, a cancer caused by asbestos dust.
DILEMMA: Dee is adamant that Peter should not be told what is wrong with him and claims he will lose the will to live if he finds out the diagnosis. However, the social worker feels that there is much to be gained from making Peter aware of it.
RISK FACTOR: By withholding information from a patient, there is a risk that Peter will be unable to make informed decisions about the final few weeks of his life, including seeking compensation for his condition.
OUTCOME: Peter is eventually informed of his terminal condition. With this knowledge, he spends his time successfully applying for compensation and fulfilling another dying wish – to marry his partner.
*Names have been changed
COMMENTARY: Working with people with terminal illnesses is never easy, writes Mark Drinkwater. Roy Nightingale, a hospice-based social worker in east London, is well versed in the concerns of patients and their family members.
However, one recent case proved trickier than most, in part because the patient, Peter, had not been told about his terminal condition. Nightingale knew that the patient had been diagnosed with mesothelioma, a lung cancer caused by long-term exposure to asbestos dust, but this had not been conveyed to the patient.
“We now have a policy in the hospice that, whenever a mesothelioma patient is referred, I will always go on the first visit because time is of the essence,” says Nightingale. “It’s a cancer with no curative treatment. So from day one of diagnosis it’s always a palliative case. Life expectancy from diagnosis to death is usually very limited.”
“In this case he was diagnosed when he was in hospital. For whatever reason, the consultant spoke to Peter’s partner, Dee, and gave the diagnosis. To which she said, ‘he mustn’t know what his diagnosis is’. She was trying to protect him.”
Nightingale was uneasy with the consultant’s decision because it put him in a quandary when visiting Peter on his return home from hospital. At the first visit, Nightingale went with a clinical nurse specialist who could attend to Peter’s immediate medical needs and gave some pain relief.
Knowing that time was short, but not wanting to unduly rush the family, Nightingale said he would return the next day to follow up on outstanding social issues.
On that visit, Nightingale suggested to Dee that it would be worth gently probing Peter about what he knew about his condition. Dee was still adamant that her partner was not to be informed of the illness. But she eventually granted Nightingale access to Peter on the understanding that the social worker did not reveal the diagnosis.
“I said to him ‘I’m sorry to see you’re unwell’, and he said, outright, ‘well, it’s that asbestos, isn’t it’,” recalls Nightingale. “For many people, particularly men, they half-anticipate their diagnosis because of the nature of their work and because an increasing number will have had guys that they work with who have died of the same disease.”
Persuading the couple to discuss the true nature of the illness was the breakthrough Nightingale was waiting for. As a result, the social worker could talk openly with them about the condition, their options and planning for Peter’s final weeks.
Nightingale was aware that mesothelioma cases typically receive compensation in excess of £10,000 and, although the couple were fiercely independent, the social worker could see that a successful claim would improve their financial circumstances.
Nightingale enlisted the help of a reputable solicitor and ensured that Peter made a claim for compensation. But Peter was aware that, because he and Dee were not married, and because they had both been married previously and had children from those marriages, she would not automatically inherit from him. So Peter made it known that he wanted to marry Dee.
It was a significant decision, although initially the couple thought it was going to be impractical to do so because Peter was housebound. But with support from Nightingale they overcame numerous administrative obstacles and put all the documentation in place for a ceremony at their home.
Having married Dee, and made a claim that later proved successful, Peter felt safe in the knowledge that this would safeguard her welfare after he died. Nightingale says the marriage gave them both a sense of emotional and financial security. “They had always meant to get married and it changed their outlook. There was a security in their relationship,” he says.
Peter died just a few weeks later. But Nightingale is confident that his social work intervention ensured that the couple could face up to Peter’s illness together and make some huge decisions that changed their final days together.
Because of the complexity of some of these cases, Nightingale co-ordinates a special interest group that meets once every two months and involves nurses, doctors, social workers and solicitors who share information about cases and working practices.
Nightingale acknowledges the value of these close working relationships and highlights the importance of reacting speedily to mesothelioma cases.
“As time progresses, it’s difficult to get any useful information as the patient is unable to express their wishes easily,” he says. “That’s why I would always become involved as soon as possible.”
ARGUMENTS FOR TAKING THE RISK
● Secret diagnosis
Peter’s partner is overly protective. If the social worker allows her to conceal the information about the diagnosis the risk is that Peter will live his final few weeks in ignorance and be unable to make financial arrangements. The social worker’s gut instinct was that Peter suspected the diagnosis anyway.
● Winning trust
The social worker’s experience enables him to quickly win the trust of the partner and negotiate access to the patient to address a number of outstanding social issues.
ARGUMENTS AGAINST TAKING THE RISK
● Lack of access
Families have complex dynamics. The social worker could easily have upset such a close-knit family and found himself shut out by the partner, which would have limited what his interventions.
● Race against time
With Peter’s rapidly declining health, helping the couple carry out their wishes was always something of a race against time. Peter was close to death and there might not have been enough time for any significant social work interventions.
By Lance Carver service manager, adult services, Herefordshire Council
This case provides an excellent example of the positive impact of the role of social work. It shows how even in the most adverse circumstances it can help achieve positive outcomes.
The social worker instinctively knew what needed to be done, not just practically, but also ethically and morally.
The fact that Peter did not know what was wrong with him was the first problem that they needed to overcome.
Without a resolution to this, further work would have been problematic. There is clearly some concern as to on what grounds this information was being withheld because there is no evidence that he lacked mental capacity.
The approach of building rapport and using persuasion to allow Peter to be informed was evidently successful in this case. If it had not been, then the social worker would have had an extremely difficult route to navigate.
The other commendable factor in this case is the rapid response. It goes without saying that this is required in hospice work but this is something that other areas could try to learn and emulate.
Earlier responses in other areas of social work have the potential to significantly reduce the level of support required.
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