Challenging situations when administering palliative chemotherapy – A nursing perspective
Introduction
There are several drugs available for palliative chemotherapy (PCT). The indications for their use are expanding and prolonging survival and/or improving quality of life for many patients with chemotherapy-sensitive tumours (Kim et al., 2005, Malayev et al., 2012, McIllmurray, 2010).
PCT is by definition unable to cure the cancer, but is used with the intent to decrease harmful symptoms, tumour burden, and pain while increasing quality of life and/or prolonging life. However, chemotherapy is not risk-free, regardless its intended purpose. Thus the challenge in PCT is to optimize tumour response while minimizing side-effects and harm (Kim et al., 2005, McCullough et al., 2010, McIllmurray, 2010). The cancer disease will eventually progress and then the risk for harmful side-effects of the PCT will increase and if continued result in a substantial worsening of quality of life (Frigeri et al., 2013, Kadakia et al., 2012, Martoni et al., 2007) or threaten a patient's life (Martoni et al., 2007). Consequently, a point will be reached when it becomes more appropriate to discontinue chemotherapy, and the physician and the health care team thus face the challenging task of informing patients and relatives about the achievable effects and limitations of PCT (Audrey et al., 2008, McCullough et al., 2010, Weeks et al., 2012). This is also stressed in the literature as a prerequisite for patient autonomy and understanding of when continued PCT is no longer the best option (Boyd and Murray, 2010, McIllmurray, 2010, Mort et al., 2008, Voogt et al., 2005).
Earlier studies have shown that from 9% to 43% of patients with incurable cancer who received PCT were treated in the last month of their lives (Emanuel et al., 2003, Frigeri et al., 2013, Murillo and Koeller, 2006, Näppä et al., 2011, Randén et al., 2013). Several hypotheses are put forth in the literature attempting to explain the wide range in the proportion of patients receiving chemotherapy in the last month of life, including the availability of more treatment choices and the physician's inability to predict the life expectancy of patients with advanced cancer (Murillo and Koeller, 2006), attitudes of the medical oncologist towards PCT (Kao et al., 2009), and the fact that physicians without communication skills are more likely to prescribe third- and fourth-line chemotherapy (Thorne et al., 2005). Recent research shows that some physicians tend to offer further PCT despite doubting the benefits of treatment, as they do not want to disappoint or take away hope from treatment-prone patients and relatives (Audrey et al., 2008, Buiting et al., 2011, Cavalli-Björkman et al., 2012, Rogg et al., 2010, Schildmann et al., 2013). However, increased availability of palliative care services in the patient's territory of residence may actually increase the interval between the last chemotherapy administration and death (Andreis et al., 2011).
The PCT is tailored by the physician and based on the patient's general condition, appearance, and experience of treatments, the treatment's expected effectiveness, and the patient's wishes (de Kort et al., 2010, McIllmurray, 2010). PCT is most often administered by registered nurses (RNs) (Audrey et al., 2008). International studies show that nurses spend much time with patients during these treatments (Davis et al., 2010, McCullough et al., 2010), and nurses and patients often build close emotional bonds (Georges and Grypdonck, 2002, Owen and Jeffrey, 2008). Thus, nurses are in a unique position to observe variations in a patient's general condition and their clinical response to PCT over time (Davis et al., 2010, Georges and Grypdonck, 2002, McCullough et al., 2010). However, studies from the USA and the Netherlands show that nurses do not perceive themselves to have a formal role in decision-making about PCT, but instead describe their role as an informal “suggestor” or “requestor” to the physician (Buiting et al., 2011, Davis et al., 2010, Mahon and McAuley, 2010).
Research shows that it is often problematic for nurses to administer PCT. For example if the physician and patient have not discussed the possibility of the disease progressing, it can be difficult for the nurse to initiate a conversation about stopping PCT with patients whose general condition has worsened (Buiting et al., 2011, Georges and Grypdonck, 2002, Saltmarsh and De Vries, 2008). Patients present different information about their general condition to their physicians than they do to their nurses; knowing the nurses do not have the authority to stop PCT, patients are much more likely to talk about fatigue and the possibility of postponing treatments with their nurses than with their physicians (Buiting et al., 2011, McCullough et al., 2010). Also according to Ferrell (2006) and Kuuppelomaki and Lauri (1998) another situation that may place the nurse at the centre of ethical conflicts around care is when they have different views from patients on the relevance of PCT. Ferrell (2006) showed that nurses who have to administer PCT that they deem futile often experience strong emotional and moral distress; these nurses may even experience the intervention as violent and cruel. Saltmarsh and De Vries (2008) found that some nurses have difficulty maintaining a positive approach to PCT when they are ambivalent about administering it and they see this conflict in terms of a moral dilemma. Erichsen et al. (2010) showed that nurses often feel morally conflicted and dishonest when they cannot understand or explain the benefits of PCT to a patient in whom no improvement or relief is observed.
Another problematic situation arises for nurses when relatives insist on PCT. Saltmarsh and De Vries, 2008, McCullough et al., 2010, and de Vries and Leget (2012) all found that family or significant others could sometimes be the driving force behind PCT and make the decision for the patient to undergo treatment even when medical staff informed them that it would be detrimental to the patient's condition. As the availability of PCT for patients with incurable cancer increases, so too does the likelihood of nurses being confronted with difficult situations when treating these vulnerable patients. This study explores challenging situations experienced by RNs when administering PCT to patients with incurable cancer.
Section snippets
Context and participants
The study took place at eight of the nine hospitals administering PCT in the three northernmost counties in Sweden (one hospital declined participation): one university hospital with three chemotherapy units, one local hospital with two chemotherapy units, and six local hospitals with one unit each, all collaborating with the oncological department at the university hospital. At the participating units, an oncologist prescribed PCT and either an oncologist or a physician confirmed the decision
Results
The 17 participants told a total of 28 stories. Some stories were based on recent experiences related to giving PCT, others on experiences dating several years back, and some on stories discussed among colleagues. All stories contained varied expressions related to four content areas in which situations with the characteristics of dilemmas could be discerned: the nurse's relationship with the patient; the patient's general condition and appearance; the possibility of reflecting together with
Discussion
The results of this study show that nurses who administer PCT are engaged in a complex task that can give rise to a number of dilemmatic situations that can be broadly related to three interwoven areas: uncertainty related to the outcome of giving potent drugs to vulnerable patients, the difficulty of resisting giving treatment to patients and relatives who are inclined to treatment, and insufficient communication between nurses and physician. The uncertainties related to PCT surface explicitly
Limitations
One limitation of this study is that the participants were from the same geographical and ethnic context. Also, knowing the outcomes determines whether or not these stories are perceived as dilemmas. It is not known to what extent and how frequently these dilemmas appear in everyday practice. Prospective studies are needed to reach a deeper understanding of these dilemmas in everyday life, from the perspectives of patients, relatives, physicians, and nurses.
The results of this study contribute
Conflict of interest
None declared.
Acknowledgements
The Northern County Councils Regional Federation (4/2009); Lion's Cancer Research Foundation, Umeå university (LP 09-1808); the Swedish Cancer Society (CAN 2009/761), and the Research and Development Unit, Jämtland County Council (Dnr JLL-293801) have all contributed to financing UN's research post, but played no role in interpretation of the data or in supporting the other authors.
References (58)
- et al.
To be involved or not: factors that influence nurses' involvement in providing treatment decisional support in advanced cancer
European Journal of Oncology Nursing
(2009) - et al.
Patient centered decision making in palliative cancer treatment: a world of paradoxes
Patient Education and Counseling
(2003) - et al.
Ethical dilemmas in elderly cancer patients: a perspective from the ethics of care
Clinics in Geriatric Medicine
(2012) - et al.
Use of chemotherapy at end of life in oncology patients
Annals of Oncology
(2009) - et al.
The content and amount of information given by medical oncologists when telling patients with advanced cancer what their treatment options are: palliative chemotherapy and watchful-waiting
European Journal of Cancer
(2004) - et al.
Oncology nurses' experiences with prognosis-related communication with patients who have advanced cancer
Nursing Outlook
(2013) Ethical issues and the importance of consensus for the intensive care team
Social Science & Medicine
(2001)- et al.
Palliative chemotherapy during the last month of life
Annals of Oncology
(2011) - et al.
Communication: common challenging scenarios in cancer care
European Journal of Cancer
(2008) - et al.
‘One also needs a bit of trust in the doctor…’: a qualitative interview study with pancreatic cancer patients about their perceptions and views on information and treatment decision-making
Annals of Oncology
(2013)
Evaluating palliative care: facilitating reflexive dialogues about an ambiguous concept
Medicine, Health Care and Philosophy
Improving family communications at the end of life: implications for length of stay in the intensive care unit and resource use
American Journal of Critical Care
Chemotherapy use at the end of life. A retrospective single centre experience analysis
Tumori
What oncologists tell patients about survival benefits of palliative chemotherapy and implications for informed consent: qualitative study
British Medical Journal
Interprofessional communication of prognosis: teaching to bridge the gaps
Education for Health
Recognising and managing key transitions in end of life care
British Medical Journal
The aggressiveness of cancer care in the last three months of life: a retrospective single centre analysis
Psycho-oncology
Integrating supportive and palliative care in the trajectory of cancer: establishing goals and models of care
Journal of Clinical Oncology
Understanding provision of chemotherapy to patients with end stage cancer: qualitative interview study
BMJ Supportive & Palliative Care
Equal cancer treatment regardless of education level and family support? A qualitative study of oncologists' decision-making
BMJ
Recognizing and responding to uncertainty: a grounded theory of nurses' uncertainty
Worldviews on Evidence-Based Nursing
Critical conversations: coordination of care between intensivist and hospitalist teams
ICU Director
Understanding palliative cancer chemotherapy: about shared decisions and shared trajectories
Health Care Analysis
Trends in the aggressiveness of cancer care near the end of life
Journal of Clinical Oncology
Aggressiveness of cancer care near the end of life: is it a quality-of-care issue?
Journal of Clinical Oncology
Chemotherapy use among medicare beneficiaries at the end of life
Annals of Internal Medicine
A phenomenological study of nurses' understanding of honesty in palliative care
Nursing Ethics
Understanding the moral distress of nurses witnessing medically futile care
Oncology Nursing Forum
Chemotherapy in patients with advanced pancreatic cancer: too close to death?
Supportive Care in Cancer
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