Ethical Dimensions and Communication Issues in

Nursing Patients with Advanced Metastatic Cancer

ANN LYNCH AND CAROL BURNETT

Royal Victoria Hospital 687, Avenue des Pins Ouest

Montrial, QuCbec H3A 1A1, Canada

Clinical research has paved the road to many advances in technology for the treatment of cancer. These technologies may give rise to questions about the value of these treatments in simply extending life, often at con- siderable cost to the individual's quality of life (QOL). One such technol- ogy is bone marrow transplantation (BMT). Since the first reported successful cases in 1968 and 1969,' this treatment modality is now being offered to thousands of patients with advanced malignant disease. This article will explore both communication and ethical issues that are emerg- ing with the use of autologous bone marrow transplantation (ABMT) in the treatment of advanced cancers of breast and ovary. ABMT has increasingly been considered for these types of cancers because of the poor response in obtaining long-term survival based on standard ther- apy.2 Recent advances in the availability of colony-stimulating factors to assist with marrow recovery after chemotherapy have resulted in lower treatment-related mortality rates for this patient population. A BMT pro- gram has been in existence at the Royal Victoria Hospital, a 500-bed McGill University teaching hospital, since 1982. In an effort to identify key ethical issues facing nurses caring for this patient population, focus group interviews were conducted with nurses on our 20-bed inpatient Hematology/Oncology Unit and our ambulatory care setting known as Oncology Day Care (ODC). Approximately 20-30 patients are trans- planted each year. The nursing care involved in the actual process of transplantation requires a three- to four-week hospitalization as well as numerous outpatient visits to the ODC for blood count and symptom con- trol monitoring. Patients who have entered the ABMT program have pre- viously been hospitalized on frequent occasions for conventional chemotherapy, followed in many instances by periods of febrile neu- tropenia. The demands that have been placed on the patients and their family are high prior to, during, and following the transplant. It was within this context that focus group discussions of ethical concerns from the nursing staff occurred. The issues of informed consent, quality of life,

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allocation of resources, and concept of hope were highlighted and will be explored in more detail as follows.

INFORMED CONSENT

Aggressive treatment protocols that include ABMT often involve seri- ous potential complications such as infection, hemorrhage, pain, and peripheral neuropathies. Consequently, the patient and family need to have accurate information about these potentially life-threatening side effects? Simply, informed consent implies that the patient’s permission to proceed with treatment is based on a full explanation by the physician of the available options and the risks and benefits of those options. This process should involve shared decision making between the patient and his/her physician, with the physician as information provider and the patient as decision maker! The process of informed consent has been explored from the perspective of both physicians and nurses caring for the BMT patient^.^ Results revealed that nurses were more concerned that patients know about the secondary effects and complications arising from transplantation, while physicians emphasized the options of treatment and possible outcomes with and without the transplant. This study also concluded that the physicians’ perception of informed consent most closely matches the patients’ in that most patients chose the option of transplantation based on outcome-namely, life or death. The differences in nurses’ and physicians’ perceptions of informed consent are, in fact, based on their different roles6 Nurses are involved with management of complications during transplant, while physicians are concerned with prescribing, monitoring, and evaluating the outcome of the treatment. The study further indicates that the potentially life-threatening side effects may not alter the patient’s decision to choose BMT. In the patient’s mind, it is often a choice between life or death. Consequently, nurses should not feel obligated to ensure that patients possess information about every possible side effect to enable them to decide upon this course of treatment. Royal Victoria Hospital nurses who participated in the focus group discussion concurred with the results concerning issues of informed consent as outlined in the study just mentioned.6 Their com- ments reflected their concerns about the process of consent in this man- ner:

It made me feel better to know that the patient was informed and com- fortable with the decisions that she had made.

Patients are informed about the risks of the procedure, but I think they are not always aware of what the side effects will be. The patients always say that although they have suffered, they don‘t regret their decision

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because to accept palliation is to accept death, and many patients are not ready to do that.

Many patients say, “I’ll take a chance,” and we have to support them in their decision even though we feel bad when the outcome is not positive.

It is not our responsibility to provide the patients with information about the effectiveness of the treatment protocol, but we need to support them through the complications arising from it.

QUALITY OF LIFE

Studies of QOL for individuals undergoing BMT have been under- taken to understand and evaluate the outcomes of this therapy. Thirteen QOL studies of BMT survivors beyond the first year were re~iewed.~ ,~ These studies included patients undergoing either allogeneic or autolo- gous BMT. These reports were analyzed on a QOL/BMT model that describes the survivorship experience in four domains: physical well- being, psychological well-being, social well-being, and spiritual well- being9 Most studies indicate that concerns about physical well-being and control symptoms were predominant within the first year of the trans- plant. However, long-term effects of BMT involving systems such as the gastrointestinal and respiratory tracts and the reproductive system con- tinued to preoccupy as many as 25% of patients in some The issue of psychological well-being for BMT survivors has been reported as not as significant as physical well-being. Most patients report that they were happy to have survived the transplant and have another chance at life. Very few indicate regret for the decision to undergo BMT.12J3 A study of long-term BMT survivors suggests that recovery is a dynamic, individ- ualized process that often makes it difficult to compare QOL experience across this group of survivors.14~15 This study also suggests the inclusion of data from the family as to their perceptions of QOL since the transplant in order to analyze if families also have ”recovered” from this process.

Our discussion group commented on the quality of life of patients in several ways:

We get so close to our patients, it is sometimes upsetting to continue with ongoing treatment.

Sometimes TaxolTM is offered when the patient’s quality of life seems very poor. It is hard to understand.

It is hard to face patients when there is a recurrence [after BMT]. We feel bad when things don’t work out.

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What would we do if we were in the same situation?

These comments demonstrate many of the dilemmas nurses face when providing care for BMT patients. The nurses’ empathy for the patients’ situation often makes it difficult, if not impossible, to separate their feel- ings about the provision of care to manage complications, and the effects that these complications are having on the patient‘s quality of life.

Nurses from the inpatient unit expressed more concern about this issue, as they actually see the patient through the most intense periods of treatment. As one nurse from the clinic said:

In our area, there are time constraints; we see the patient for only five to six hours, and then they go home. Although we get attached [to them], it is not as intense an experience as hospitalization.

As a result of the dilemmas nurses encounter in their daily practice, they have developed a number of strategies to minimize the cognitive dis- sonance between care provider and one who extends suffering. These strategies will be explored at the conclusion of this chapter.

THE CONCEPT OF HOPE

Hope has been described as a multidimensional dynamic attribute that includes the concept of confidence in the outcome, possibility of a future, and belief in a Higher Being.16 Hope has been identified as a key mechanism by which one can cope with the stress of being faced with a life-threatening illness such as cancer. The need for hope has been identified as one of five phychosocial needs of cancer patients.I7 Generally, one considers the need for cure or, at least, prolongation of life as an important patient goal. However, nurses often encounter difficulty in inspiring hope for this type of outcome in patients with advanced disease who are participating in experimental protocols. The concept of hope or what is hoped for may then change to hope for survival to attend an important family event, (e.g., wedding or graduation) or even hope for a peaceful death when all available treatment options have been exhausted.

Nurses involved in caring for BMT patients at our hospital expressed their views on the concept of hope for patients in several ways:

When patients desire aggressive treatment and embark upon a protocol for metastatic disease, there is hope where none existed before-however, there is always uncertainty about the eventual outcome.

Patients are very brave, and we have to play a role in offering hope.

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There is happiness and hope as opposed to what people outside [the hospital] think about cancer. Here, we see hope, and it makes us feel sat- isfied to see patients smiling again and doing well.

These comments demonstrate a more positive perspective on the nurse‘s role with BMT patients. Overall, nurses employed some very cre- ative strategies to deal with the difficulties of patients enduring suffering to arrive at the outcome of either disease-free survival or ongoing disease and eventual death.

STRATEGIES TO MANAGE DILEMMAS IN CARE

Instill realistic hope. Nurses often maintained that this was difficult when the patients’ cancer was progressing during the protocol; however, there was a sense of duty to carry on for the patient’s sake.

Patients tell us that they have to keep trying, and they trust us to sup- port them and carry them through to whatever the outcome. When the patient becomes palliative, they usually stay on the active treatment floor. Although it’s difficult, it is also rewarding for us to provide whatever com- fort we can.

Realize that the ultimate outcome is “out of our hands.” Nurses described their spirituality with this strategy in that even despite excellent technical care, certain patients do not have long-term survival. By accepting that “a higher authority” ultimately determines a patient’s outcome, nurses are able to place their fate, and that of the patient, in a higher being. This strategy then permits the nurse to provide the care required to ensure that the patient’s and family’s goals are met.

There is less ambivalence about the care when the patients become pal- liative. We are free to provide comfort care and ensure as much dignity with death as possible.

Be able to adapt care from active treatment protocol to palliation when required. Nurses commented on this:

Care must be individualized.

The close rapport with patients makes their death more difficult, but our role can be successful by making the patient as comfortable as possible.

We must be advocates for the patient and keep in focus what the chang- ing needs of the patients are. We can‘t feel guilty about shifting gears to

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palliation and comfort care.

Support patients‘ decisions.

Patients trust us and need our support to carry them through to the out- come, whatever it may be. We have to make sure that we are advocates for patients in whatever decisions they make.

Alleviate patients’ anxieties.

The anxiety of patients is often difficult to deal with when there are no guaranties about the outcome of the protocol.

It is helpful to encourage sharing of experiences among patients to decrease their anxiety.

Care must be individualized to respect the patient’s level of anxiety related to their treatment.

COMMUNICATION ISSUES

The patient’s involvement in the BMT protocol requires a certain com- mitment to active participation in their care. This participation is strongly encouraged by nurses in both the inpatient and ambulatory care settings. The nurse assesses the patient’s goal, abilities, and strengths and endeav- ors to decrease anxiety through the provision of information tailored to meet that patient’s needs. The individualization of psychosocial approach and symptom management ensures that standard interventions are adapted to meet each patient’s situation in a more specific fashion.

The key to increased patient involvement, as we see it, is a nursing team skilled in assessment, negotiation, and support. The dynamic role of the nurse includes direct care to the patient, providing education regarding symptom management and discharge planning, and facilitat- ing the transition to home. The patient is encouraged to question and par- ticipate in her own care. The nurse then adapts her communication style to meet the needs of the more experienced, knowledgeable patient.

It is clear that there are many challenges facing health professionals who care for this patient population. Close collaboration with the physi- cians on our team ensures that patients and nurses receive clear commu- nication about the goals of the treatment plan. It is our hope in sharing these insights to challenge other health care teams to provide patient- and family-centered care that is compassionate to the needs of those who depend so greatly on us.

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