Jenny Barker has been a Home Care Sister attached to an independent Hospice in the West Country for many years and is now retiring. We wish her well in her new life whilst thanking her for this contribution. Without her and the many like her we could not maintain the autonomy and control of our lives in the final stages, reaching the end of our journey with dignity.
This essay is a discussion of the effect of cancer and its symptoms on relatives caring for the patient in the home and how their response can influence the patient, monitored by the Home Care Sister, who has to be mindful of her own reaction to the situation.
To be autonomous means to have choice and control in our own lives, an idea that nurses adhere to very strongly, though we have to accept total autonomy is hardly ever possible. Patients in the community are living in their own environment, with the family, house, garden, hobbies, pets and work influences, from which, in hospital, they are separated. When community staff visit, they are privileged guests in that person's home, so emphasis is different – the patient being the "host" as it were. In the institution of care, the rôles are reversed, even though the client does share in the planning of his or her treatment.
Community staff are accepted by the patient and family and, for a while, become part of his or her life. This is just for a time; our function is temporary and we must remember that people have managed to live most of their lives without our support.
Advocacy on behalf of the patient has become accepted as part of the nurses' rôle but it does have to be used with discretion and the appreciation that it may not be wanted.
The rôle of Home Care Sister is similar to that of the famous MacMillan nurse. The difference is that we are employed by the local hospice, as is my case. Geographically the area we cover varies from very rural to small villages and busy market towns. A referral can come only with the approval of the General Practitioner and the agreement of the patient. The rôle is primarily a supportive one to the patient and his or her family but also to the local community team to which we become attached. We are considered as palliative care specialists and advise on symptom control – our greatest benefit being that we have time to spend with the patient which the GP and Community Nurse do not have. This enables us to evaluate the problems more keenly. As appropriate, the Home Care Sister discusses the situation with the Community staff, referring as necessary to the Hospice clinical team or offering day care or possible admission. However, the main use of our time is for listening to the patient and the carers, sharing their worries, answering questions, discussing present problems and generally continuing the assessment of the situation. We visit the patient in his or her own environment. If the referral is an early one, get to know him or her and the family in a relaxed way so that familiarity and trust are formed. As Field (1989) says, repeating a quote from an unnamed Community nurse.
"At home they are more in control of how they run their lives. You have to negotiate with them how they want to do it. In hospital you almost set a procedure but at home you play it by ear."
It helps to know the people one is privileged to be involved with and to be aware of their history, especially of how they tackled problems in the past – alone and as a family. To be aware of their approach to difficulties gone by gives one a fair idea of their coping mechanisms and can assist in the planning of the future, with the individuals involved. The family find great benefit in being able to speak of their grief, anger and fears to someone who is uninvolved and empathic without upsetting the main source of their woe. Kubler-Ross (1979) speaks graphically of the family's response to their loved one's illness, and one of the prime problems is difficulty of communication because of the complexities of emotional reaction. This genuine concern can undermine a patient's self direction.
One of the most common difficulties that families have to contend with is their sense of inadequacy when the patient becomes more frail. It is difficult to witness and especially so if accompanied by pain or vomiting. As Gregory (1994) asserts, to watch someone you care for suffer, directs attention away from the things which are most important; as pain overwhelms the patient, so does the sense of their own helplessness, even in the most loving of carers.
Fred was a 78 year old retired farmer with cancer of the prostate and bone secondaries. He was married to Ada and she cared for him stoically, with help from her widowed sister who lived down the road. They were part of a rural community and, though not unwelcoming, preferred to limit the Home Care Sister's visits to one a fortnight. Fred was quietly dignified as he faced his eventual demise, pottering in the garden and watching sport on TV. He was in charge of his tablets and mindful of the side effects of pain killers, which he dealt with according to the instruction of the Home Care Sister. They were a very self-contained unit and Fred remained in control, with Ada and her sister supporting him. This scenario went on for several months (with occasional community care input and the Home Sister's regular fortnightly visit) until one day the Sister called in, to be met at the doorstep by Ada. She wanted Fred to be admitted, he was going downhill fast and they could not cope. Ada maintained that she and her sister were sorry but Fred would have to be looked after by strangers, after all. The problem was that Fred had not had his bowels open for a few days and his pain had increased, therefore he was feeling rather poorly. Fred indicated rather strongly that he wished to stay at home, even though it was difficult, but Ada was so concerned that she put pressure on the Sister to have him admitted as she could not bear to see him being so weak and uncomfortable.
Discussing this further with Ada, she agreed that if Fred was feeling more comfortable, even if he was more frail, she would want him to stay at home, but she felt that at the moment that the responsibility was too much for her. She was strong enough in herself to carry on but the sense of being responsible for Fred 24 hours a day was very difficult. It was suggested by the Sister that the community staff should be allowed in more often and various changes to the drug regime be made. Would Ada agree to accept this help now and see if it was enough to keep Fred at home with her blessing? She agreed, the situation was resolved easily, and Fred and Ada had another six months together until he died in his own home.
This situation was quite straightforward and improved within two days but it does illustrate how easily and quickly a patient's autonomy can be undermined by the family's reaction to the change in circumstances.
Through knowing both Fred and Ada, the Home Care Sister was able to speedily assess, form a true picture and, with supportive direction, enable both of them to carry on in the way they really preferred. This was not an unusual scenario and it was made easy to resolve by Ada being only too willing to carry on with the service that the team were able to provide. Had she been exhausted or the family unit not so strong, it may have been necessary, for a short while, to suggest that Fred go into the Hospice for a few days respite care whilst Ada recovered her equilibrium. The surrender of Fred's independence then would not have to be total as he would have returned home after the break, although it would have interrupted his chosen direction.
There are circumstances in which it is not possible to challenge on the patient's behalf, when the patient chooses to have his autonomy eroded – it is essential that the professional does not interfere with this. We have to be aware that the patient may not want our advocacy.
David and Maggie, both in their late sixties, without children, had come from the north of England to retire in a small market town in the West Country. They chose to live on a private estate of smart bungalows, where most of the residents were retired. It was David who became ill with a fast-growing cancer of the lung. The GP called in Home Care to support Maggie as much as her husband, as the GP was concerned that she was over-caring for David. After two visits the Sister was able to witness that Maggie had really taken over every chore that David used to do, as well as her own routine. David was still quite able to do most things, though it was only a matter of months at the most that he would be capable. The Sister felt concerned that he was not getting as much out of his life as he ought. Maggie spoke in the first person even in front of David, "I have decided to put the back garden all to grass as I did not want to grow vegetables" was a typical remark.
On departure one day, when the Sister walked down the garden path with Maggie, she asked if Maggie had always been the decision-maker of the family. Maggie replied that this had not been the case but she now wanted to protect her husband from everything, to save him any bother as they both knew his time was limited. He was not to have any worries at all.
During the next visit, as Maggie was out shopping, David revealed that he was aware that he had been "made redundant a bit early" as he put it, but that he understood and was willing to surrender to it – he did not want to reclaim his power. David went on to point out that by being "emasculated" as it were, he was really seeing his wife grow self-sufficient and independent – so that when he did die, she would already be capable and not helpless as some of the widows he had witnessed on the estate. This patient taught the Sister a big lesson in ethical reasoning, without realising it – that there are no hard and fast rules to an individual's autonomy. In his own way, this man was still autonomous, as he had chosen to accept this change of emphasis of rôles in his marriage and was pleased to see his wife becoming self-reliant.
David died three months following on from his conversation with the Sister. In that time Maggie got her lawn at the back, changed the car to a smaller one, and her devoted care of her husband was amazing. When he died, Maggie said that she had known that she was over-doing it in the early stages but feared that time was not on their side and she wanted him to see that she would be alright on her own and she knew that she had succeeded. He had died with peace of mind.
In his unique way, David not only gave Maggie her independence but he remained autonomous over the last few months of his life, living his life as he chose. The couple had tackled their situation together, in their way, separate but together. There had been no need for interference in this, but respect and support which in themselves are enabling facets of care.
Being in control is vital and in every Home Care situation we must appreciate that the patient, though he be suffering an illness from which he will eventually die, must be allowed to keep his self-respect. This can be eroded enough by the illness, through the symptoms and the sorrow experienced by family members and also by the intrinsic nature of emotional pain appertaining to terminal disease.
It is difficult for the Home Care Sister not to intervene at times and essential that she knows her clients well enough either to advocate or direct or support them in the direction they have chosen for themselves. Symptom control is fairly straightforward, the problems usually being obvious, or response more open and active. Relationships are far more complex and nurses have to be able to accept the circumstances in patients' homes and adapt their support accordingly. The ability to adjust to the different facets of each situation is essential in the community and cannot be underestimated. As we are being encouraged to be the advocate of the patient, far more so than in the past, and are becoming increasingly aware of the complexity of ethics, we must also realise that even if we do not influence a situation, or supply an answer to all needs, and if our patients do not maintain total autonomy, it is enough that we have been "in there" with them. They have managed their lives for many years – most of them – without our assistance, so in the journey of terminal illness they will continue – we just join them for a while.