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Conducting research in palliative care patients: a burden or an opportunity?

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Conducting research in palliative care patients: a burden or an opportunity?
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  Research: A Burden or an Opportunity? Preston N, Payne S and Todd C Researchers from the Cancer Experiences Collaborative 1  (CECo) are conducting a study to see what the barriers are in recruiting patients into end of life studies. Initially we are looking at the literature but plan to take this into a larger study in the future. This led us to reflect on the role of the nurse in recruitment to end of life studies in palliative care units and hospices . Traditionally nurses have taken on the role as patient advocate and at times felt the need to protect patients from overzealous medical colleagues or inappropriate research trials. This reaction is magnified with nurses who are caring for people in the last weeks or months of their lives. Research into end of life care is increasing throughout the world with more and more departments being created with the principle aim of conducting end of life research. Research often falls into two camps; clinical trials to evaluate the best way to manage a condition or symptom, and interviews or questionnaires to help us gain a better understanding of issues related to palliative care. The driver for research is to deliver evidence-base care rather than experience-based care. A demonstration of the effectiveness of evidence from research changing practice was shown by Todd et al (2002) who found that a double dose of morphine at night did not provide adequate pain relief until morning as previously thought  –  the early morning dose of morphine was still required. This research has hopefully led to better pain control at night.   Nurses’ anxieties aout researh   Nurses aieties aout researh are ot ithout foudatio. ‘esearh has the potetial to ause harm. Research ethics committees rigorously assess protocols to reduce this potential for harm, but risks to patients can never be completely eliminated. For example a study evaluating a clinical intervention may commonly require additional blood tests or additional visits to a hospital or hospice. A questionnaire may include highly sensitive questions which otherwise might only be used within the realms of an established relationship. Both interviews and questionnaires can evoke reactions that then need to be dealt with. The style of research is rarely the key factor in whether a research study is harmful, rather the manner in which it is conducted.   Indeed there are extreme views on both sides of the argument about whether or not end of life patients should be included in research. Some believe that research in dying patients is never appropriate and that it is, 1  More information about CECo can be found at http://www.ceco.org.uk/   a affrot to the digit of the teriall ill perso ad a epressio of profoud disrespet for the eotioal ad phsial state of suh patiets de ‘aee 994. This view probably echoes with many people in society as well as nurses. When we explain our roles as researchers in end of life care to people we meet they are usually shocked that research is carried out with such vulnerable groups of people.   Gatekeeping It is not surprising then that nurses ha e soeties ee idetified as gatekeepers fro researh. Gatekeeping is where health professionals or family members prevent patients being asked to enter research studies because they believe that research in dying patients is inappropriate. They believe they are protecting patients from making a difficult decision about whether or not to join a study, perhaps because they believe the patient will find it hard to say no. When researchers have asked end of life patients whether or not they feel able to turn down a research study they said they did. Interestingly they also said that they did not want the option of turning down a research study taken away from them, by a nurse or family member, as making the decision for them self made them feel like an autonomous being. People who are dying have been said to experience a social death before their actual death as society turns away from them. The desire to remain a cognisant being that can make autonomous decisions about whether to enter a study may in itself be,   a resistae to soial death, a opportuit to e a atie ad partiipatig itize agai rather tha a ialid or patiet Kedall et al 7.  There are various examples in the literature, which highlight the benefits of being involved in a trial by palliative care patients. These include a feeling of altruism where other people will benefit from the study results in the future, the desire to be seen as more than just a dying person, feeling reassured that palliative care is an important area of research, getting closely followed up, being treated by specialist staff, the prospect of helping staff, the pursuit of hope and the chance to benefit humanity (Terry et al 2006; Williams 2007). Armed with this information nurses may feel more able to support patients on trial and give patients the opportunity to decide about involvement in research studies for themselves. A research partnership Like nurses, families want the best for their relative. They may fear research involvement and sometimes block the approach of researchers who wish to approach their relative about joining a research study. Nurses can help relatives to understand that palliative patients are able to make  decisions for themselves and that the research may be beneficial to the patient in the ways previously described. Nurses are in a unique position with the patient and family and can use this bond to allow for a free discussion about the study. Sometimes family members are asked to join research studies and the patient acts as the gatekeeper. They may feel they have asked too much of their family and friends already and asking them to participate in research is too much and too upsetting. Research has shown that most bereaved relatives involved in research found the experience helpful and few experienced distress (Seamark et al 2000). However for some this kind of research will be upsetting and researchers need to make sure that there is sufficient support for them after the interview. Once the researcher has gone this support is likely to fall to the nurse. For this to work effectively researchers need to work alongside side the nurses and mutual trust to grow. In this sense research can then be an opportunity for nurses to engage with patients, to empower them as autonomous beings and to support them as they make decisions about whether or not to  join research studies. References de Raeve L. (1994) Ethical issues in palliative care research. Palliative Medicine . Oct;8(4):298-305. Kendall M, Harris F, Boyd K, Sheikh A, Murray SA, Brown D, Mallinson I, Kearney N, Worth A.Kendall (2007) Key challenges and ways forward in researching the "good death": qualitative in-depth interview and focus group study. British Medical Journal  . Mar 10;334(7592):521. Seamark DA, Gilbert J, Lawrence CJ, Williams S. (2000) Are postbereavement research interviews distressing to carers? Lessons learned from palliative care research. Palliative Medicine  Jan;14(1):55-6. Terry W, Olson LG, Ravenscroft P, Wilss L, Boulton-Lewis G (2006) Hospice patients' views on research in palliative care. Internal Medicine Journal Jul;36(7):406-13. Todd J, Rees E, Gwilliam B, Davies A. (2002) An assessment of the efficacy and tolerability of a 'double dose' of normal-release morphine sulphate at bedtime. Palliative Medicine  Nov;16(6):507-12. Williams A (2007) Recruitment challenges for end-of-life research.  Journal of Hospice and Palliative Nursing  9(2) 79-85   Dr Nancy Preston Senior Research Associate International Observatory on End of Life Care Division of Health Research Lancaster University Lancaster LA1 4YT n.j.preston@lancaster.ac.uk Professor Sheila Payne Director of the International Observatory on End of Life Care Help the Hospices Chair in Hospice Studies Co-director of the Cancer Experiences Collaborative Division of Health Research Lancaster University Lancaster LA1 4YT Professor Chris Todd Professor of Primary Care and Community Health/Director of Research The School of Nursing, Midwifery and Social Work The University of Manchester Room 6.314b, Jean McFarlane Building University Place Oxford Road Manchester M13 9PL   
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