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Life to be LivedChallenges and choices for patients and carers in life-threatening illnesses$

Catherine Proot and Michael Yorke

Print publication date: 2013

Print ISBN-13: 9780199685011

Published to Oxford Scholarship Online: January 2014

DOI: 10.1093/acprof:oso/9780199685011.001.0001

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Blurred boundaries

Blurred boundaries

Chapter:
(p.121) Chapter 13 Blurred boundaries
Source:
Life to be Lived
Author(s):

Catherine Proot

Michael Yorke

Publisher:
Oxford University Press
DOI:10.1093/acprof:oso/9780199685011.003.0013

Abstract and Keywords

The personal and intimate nature of the relationship between professional carer and patient and the poignancy of the potentially terminal outcome of the illness challenges the way therapists manage boundaries. Reciprocity of feeling and strong links can develop, especially in terminal stages, and self-disclosure can convey our sharing something of humanity. It is argued that the final decision for therapeutic action rests with the patient and not the professional, however senior. The patient’s dependence often smothers that right. There is responsibility towards the patient and not for him. The role of the professional is to share in the relevant problem, not necessarily to resolve it. Clarity about expectations and boundaries is more than agreeing on practical issues; it is about sharing the power in the relationship. For professionals working in an organisation, the employing institution will make its own demands about their use of time and resources. Dual responsibility to the patient and the institution can lead to ethical dilemmas.

Keywords:   boundaries, patient expectations, confidentiality, self-disclosure, patient power, patient dependence, responsibility, power sharing, ethical dilemmas

The personal and intimate nature of the relationship between a professional carer and patient and the poignancy of the potentially terminal outcome of an illness can challenge the way carers and therapists manage boundaries. There is an emotional cost to working with the chronically and terminally ill, which needs attention. The following stories and reflections highlight a number of boundary issues that came up in the interviews.

Expectations and projections

Reading through the narratives it is evident that the therapist, the spiritual carer, the nurse, the doctor, the social worker, the volunteer, the friend, and the family all counsel. What is the difference between them? In search of best practice, professions clarify what they offer; but what about the patient’s expectation?

One of us, having worked for more than seven years in palliative care, has been struck by how little patients discriminated between who offers what. Patients do not wait until the doctor’s visit to ask about the itch that came up in the night, they will ask the first person they see and they will also ask any person who passes by for a drink, for help with the pillows, or even to go to the lavatory. They have questions, feel sick, are anxious about their families, have administrative or financial worries, struggle to make sense of the disruption in their lives, feel guilty, appreciate the care and pain relief; all of this colours how they are and what they may or may not want to talk about, when and to whom. Yet all professionals have their specialities and competences, things they can and cannot do, not least according to health and safety regulations. How can we clarify and negotiate the patient’s expectations in the light of the professional’s offering? How do we affirm the family carers’ role in relation to the professionals coming from outside without diminishing their responsibilities and commitment?

Intrigued, we held a small poll, asking ourselves and others what we had expected as patients. The consultant’s visit brought hope and fear: relief that one might be discharged from hospital, anxiety about the latest results, (p.122) information discussing the treatment, but also hope that the consultant might be pleased with how the patient was doing. The nurse is seen as a friend, encouraging and welcoming, as a performer of nursing acts or even a servant. There can be a more intimate relationship with the night nurse, who is reassuring and may help the patient through a difficult patch. Allied health professions can be associated with pain and struggle, as in rehabilitation physiotherapy, or with relaxation and well-being, as in aromatherapy and massage. The visit of a psychotherapist arouses gratitude or perhaps concern: ‘She’s come to sort me out’ or anxiety and resistance: ‘Maybe he thinks I’m not coping or going a little mad’. On the other hand, the visit of a chaplain can be challenging or surprising: ‘Why has he come?’. If one is offered communion or another sacrament the visit might match an expectation or lead to a sense of embarrassment, feeling that ‘My religion is a private affair and I don’t want it identified in public’.

Whether positive or negative, apprehensive or welcoming, broad or narrow, expectations condition what the patient can hear and accept. We need to take these expectations into account, making space for them and clarifying what we have to offer accordingly. Clothing has an effect: a stethoscope can make the patient and family anxious, curious and often rather subdued; badges, if they can be seen, are scrutinised to try and work out who they are talking to. Some people may feel relieved to keep it as a friendly visit when they see the chaplain’s clerical collar, while others will also want to feel carried by his prayer because they feel that they cannot or are not worthy to offer it themselves. We doubt, however, that patients with no hospital background are aware of the differences in the blouses or other indicators of status or role worn by nurses, volunteers, and allied professionals, not to mention social workers and psychotherapists, who have no dress code.

Since the experiment with Pavlov’s dog in 1904, psychological research has shown much evidence of how the expectations of the hearer are fundamental to their understanding of what is going on. This raises issues that are worth a research project, especially if we recognise how the effect of therapy and care depends on the match between what is offered and what is expected. We cannot ignore the baggage of past experience, which conditions our response to things and people, for instance the fear of the unknown and the unfamiliar, a sense of isolation and loneliness, or the questions ‘What have I done to deserve this?’ and ‘Now I’m here, what is expected of me?’.

It takes professional competence to be aware of people’s expectations and work with them, but personal sensitivity must also be used in addressing these issues. Many doctors say that they are better doctors for having had the experience of being a patient.

(p.123)

A friend told us that never, in his fifteen years of practice as a surgeon, had he realised how frightening medical instruments are; he experienced a huge sense of vulnerability and fear when they were pushed up his nose. Having his polyps removed has changed his practice, and now he always takes time to comfort people before intervening.

Research and experience in psychotherapy stress the importance of defining the boundaries with the client. Matters of confidentiality, time, duration, and cost of the sessions need to be clarified. More than just agreeing on practical issues, this clarity is about sharing power in the relationship, having a shared understanding of what the problem is, how it is perceived, how it will be tackled, and about what is expected by both the therapist and the client. In psychotherapy there is an additional check of whether client and therapist feel comfortable with each other. Medical and nursing conditions do not usually leave room for the latter, but one can always take the time to recognise issues of perception and expectation and try to clarify them in a shared understanding.

Shared responsibility

Carers—whether professionals, volunteers or family members—offer the patient the presence and security of having somebody there. They are people who are prepared to give of themselves. Professionals make available their expertise as nurse, therapist, or doctor, and also share with the patient some of their personal qualities, such as attention, spirituality, humour, and their inner being. The volunteer gives of their time and of their personal qualities too. The relative or friend gives of their love, faithfulness and commitment.

There will be some people with whom carers fail because there is nothing more that they have to offer, or because the patient cannot cooperate or does not want to explore their feelings—and that is their right. If one of us had cancer we might decide that we do not want radiotherapy. The doctor might promise a 99.9 % chance that the tumour will go if we have radiotherapy, but whether we have it or not is ultimately our choice. Rabinovitch (2007) talked with her doctor about the cost of treatment, wondering whether she would live any longer because of it. Apart from the financial implications, patients are not always aware of the cost of travelling to and from the hospital for treatment—in wear and tear, discomfort, and indeed the amount of time involved. As all treatments can fail or have difficult side effects, there remains the question of the use of time when life may be short.

Patients are not always aware that they have a choice. Their attitude depends on the information available to them and on how they perceive the caregiver.

(p.124)

One of us remembers talking to a patient whose course of chemotherapy had been interrupted because her blood count levels and markers were critical. She was not feeling well, and when asked what she would really like she said: ‘I trust my doctor. If he thinks it’s right to have more chemotherapy, I’ll go for it.’ She did not even dare to ask what the consequences were.

Looking up to the doctor, this patient did not take part in the decision. The idea that there was an option had not even occurred to her. Heyse-Moore (2009, pp. 84–85) indicates this is a recurring phenomenon. Most patients follow their doctor’s advice because they believe it will increase their chances of survival. They struggle with taking responsibility for their illness and its management and do not feel able to make the technical decision through their lack of knowledge or experience. After all, they think, the doctor knows best and many doctors expect compliance with their advice.

The responsibilities of the professional working with the chronically ill or dying person can be very exacting, especially when there is likely to be a strong sense of dependence. The recognition that ‘after all they are the professionals’ will have strong influence over the patient or client, however carefully guidance and care are delivered. The extent of responsibility is variable according to the circumstances, but we consider that the focus should be on the patients and responsibility towards them rather than in a direct sense of responsibility for them. The professional will be working within frames of reference and will be answerable to their employer or professional body but should not take responsibility from the patient or their immediate relatives, who must be the final arbiters.

It can be very difficult for some patients to give themselves the choice. Some might even feel more secure if the doctor or the nurse or anybody else makes these difficult decisions for them. Our experience as patients has been that feeling part of the decision-making was healing. A trusting relationship, in which the options and their possible consequences and the doctor’s recommendation were made explicit, helped us feel part of what was happening. This raised our morale as well as our physical well-being and progress.

Not all healthcare professionals feel comfortable in giving ‘their’ patients power. This may be due to the fact that they may not have been trained in power-sharing or because they choose to keep a distance as part of their emotional self-protection against the pressures of the work. Moreover, to be successful, a shared partnership between doctor and patient needs to be put in place from the very first meeting. Trusting and getting to know each other in the intimate way illness may demand takes time, and this may be a major professional challenge in overworked environments. (p.125)

Individual and institution

It will be clear from the stories in this book that professional carers have to contend with personal and organisational boundaries. Nobody employed by a hospital or hospice can disassociate themselves from the patients’ and the carers’ expectations of the institution and, vice versa, from the institutions’ expectations and plans for patients and carers. We have noted how organisational realities can influence or even short-circuit the encounter; a number of challenges can also arise from the possible (mis)match of individual and institution.

Has a junior doctor or a registrar the same weight as a consultant? We know of patients who have been far more sensitive to how attractive their doctor was than to his rank! Do doctors’ perceptions of their position in their organisation affect how they relate to patients and staff? A friend who was a patient of a highly respected academic felt that his interest in her went no further than seeing her as an interesting research subject.

The wider question of the capacity in which carers work has implications for the perceptions and expectations of patients and carers. It also has an impact on the carer’s accountability in the carer–patient relationship. This affects both professional and lay carers. A therapist who is external to an organisation can bring a different perspective. Independent of the institution, the client is the focus and the external therapist may help the patient to take responsibility for themselves, both in and outside the medical environment. Boundary issues here have to do with personal involvement and cost to the therapist of losing someone they have grown close to.

Therapists and doctors working in a hospice, a hospital, or a paramedical organisation on the other hand can find themselves facing institutional obligations that compete for the time and support they can offer a client or a family. The dual responsibility to the patient and the institution can lead to ethical dilemmas. In times of limited resources, this can be highlighted in the choice of drugs to be used in a particular case, with cheaper, less beneficial ones used in preference to the better but more expensive ones. An inbuilt duty and control mechanism in institutions tends to limit the personal scope for action. Issues of confidentiality and boundaries can arise. For the clinical staff within an institution, the primary focus should be ‘coping with’ the implications and consequences of the illness and harnessing the patient’s strengths and resources to do so.

Information and self-disclosure

Some interviewees found that their nursing background and knowledge of treatment could effectively be brought into their conversations with patients, (p.126) even though at the start they were hesitant to do so. They felt that as counsellors or chaplains they were in another profession and had left nursing behind. Sue reflected:

For some patients and clients, my knowledge of the process of the treatment was very useful. For some clients it wasn’t, and I would never even go there nor even tell them. Others were fearful, wanted reassurance, or I suggested that the next time they were up at the hospital they would mention their query and check it out with the nurses or doctor. What made a difference to patients was the reassurance that they were not going mad, that this was all right and that they could regain control of their own life.

Here again, there is no general rule. Ex-nurses or ex-doctors using their knowledge to reassure and encourage a patient in a counselling encounter are wary of being seen as replacing the direct link with the nursing and medical team. Yet they realise that in some cases their input can help patients and families to make the most of an upcoming encounter with their doctor or nurse, to whom they always refer.

In her work with patients facing life-altering illness, Rachel tried to help people be aware of what might be helpful to them, such as leaflets and information, but also emotional resources and parts of themselves that they can turn to when things are difficult. A former and long-retired nurse, she was very discreet about sharing medical knowledge in case it undermined the relationship between the patient and their doctors and nurses. However, by her manner, she tried to give encouragement and confidence so that each medical hurdle was successfully accepted and coped with. Rachel also recognised that by providing medical facts and knowledge, she could be in danger of avoiding her real task of helping the patients come to terms with their feelings.

The issue of just how and how much of their personal experience should be revealed by the carer is related at its deepest level, not to supplying information, but to sharing something of humanity. Empathy, as we have considered, is crucial, providing intimacy, but also space between carer and patient, allowing for a deep understanding of the other’s hopes and fears. By helping to reveal something of themselves, the carer can add a subtle support based on that common humanity and solidarity—we are all fearful, pain is ghastly, death is the great unknown. It is not a question of providing answers, but of sharing the struggle. The patient or client is helped to realise that as a human being they are not alone. As things ebb and flow in the course of the illness, patient and carer may recognise this deep companionship on the way, but also that they remain, in all the changes, vulnerable and exposed. (p.127)

The challenge of visiting the dying

Two psychotherapists interviewed worked with terminally ill clients until they died. They had to make decisions about their line of conduct in these exceptional circumstances. Benedict made the following comment:

The point came when Arthur had to be hospitalised. His cancer ward was an ordeal of suffering, pain and appalling smells of suppurating wounds. He was full of tubes and his family was finding it very difficult to visit. From his sick bed, Arthur suggested that they bring me along, so they would feel stronger. It was a moving experience for me; it was a difficult one too.

My task was not to spend too much time with them but to protect them and enable them to meet in a way that was neither overpowering for him nor overwhelming for them. We used to meet up beforehand, outside the hospital. It was a question of giving them strength to survive the physical ordeal as much as the emotionality of it. These visits happened four or five times.

Similarly, Joanne had been working with Veronica, the diarist, for over three years when her client no longer had the energy to come to see her. This is when Joanne decided to end the professional part of their relationship. She visited Veronica in her home as ‘a companion on the journey’ and there would be no more paying. She writes about her experience towards the end of Veronica’s life:

During the last week of her life I saw Veronica once. Each day I met her husband and her friend as they nursed her with McMillan nurses. I remember collecting the first prescription of morphine, being part of the ‘case conference’ with the GP in her home, and sitting by her an hour or two after she died, saying my goodbyes.

At her funeral I read a story she wrote. I think of her every year at the anniversary. I remember the sand tray (as a Jungian therapist, Joanne used a sand tray as a medium to visualise and express feelings) and always the little black creature in the corner of the tray—I guess it was her fear. She would bring a summer iris, rolled up tight, and we would put it in water and during the session it would open out.

It is notable how Benedict and Joanne, both individual therapists, became involved with their terminally ill client’s family and friends towards the end. In both these cases it seemed a natural move, as if from journeying deeply with a dying client they became personally involved and felt a sense of responsibility to support the client’s nearest and dearest in a way the client would have wanted.

Furthermore, such journeying with the client until the end may be a means of dealing with the therapist’s own sense of loss. Joanne said how important (p.128) making her goodbyes after Veronica’s death and taking an active part in the funeral arrangements were for her. Rachel, on the other hand, felt bereft of a means of dealing with her residual grief when she decided not to go to a client’s funeral. Deciding to stick to the clear boundary of her role as counsellor she denied herself a possible means of helping to work through her experience of loss.

Both Joanne’s and Rachel’s experiences remind us of the reciprocity that may come from a relationship between a counsellor and a client who is dying when they relate at depth and boundaries become blurred. Being there for another person is healing, not only for the one dying but for those around him. All are human and all share the burden of loss as well as the reality of our mortality. We wonder whether, when a client is embarking on the final stages of his life, in his dying or death, his presence may offer some healing to the counsellor that walks alongside him at that time.

References

Bibliography references:

Heyse-Moore, L. 2009. Speaking of Dying. A Practical Guide to Using Counselling Skills in Palliative Care. London and Philadelphia: Jessica Kingsley Publishers.

Rabinovitch, D. 2007. Take Off Your Party Dress. When Life’s Too Busy for Breast Cancer. London: Pocket Books.