CHAPTER 3: METHODOLOGY
3.4 T HE METHODS OF DATA COLLECTION
3.4.1 The design
3.4.1.1 Phase 1 Multiple-case study
3.4.1.1.1 The planned design
This phase engaged with patients’ experiences, supported by additional input from others around them, and was aimed at giving an in-depth understanding of the use of ADs in palliative care. The plan was to encompass both the process over time (retrospectively) and the parties influenced by it. This was sought after by favouring in-depth interviews and by focusing on a small sample (Denscombe, 1998; Payne, 2007). In order to exploit what can be learnt about ADs at end of life and to maximise the perspectives, it seemed that by using a collective case study (CS) design, my study could refine conceptions about ADs that appear in the literature by revealing variability not previously recognised (Stake, 1995).
Setting
The study was conducted in Israel. With the advantage of the country’s small size, there were no further geographical limitations.
Sampling
It was planned to include between 10 and 15 people with long term conditions (LTCs) who had created ADs, as central figures, and around each to include relevant stakeholders, preferably forming 10 CSs. The variation that was
Data analysis
Phase 1 Phase 2
Data collection challenges and their resolutions
Phase 1 Phase 2
Phase 2 (survey)
Planned design Actual process
Phase 1 (multiple case study
)Planned design Actual process
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sought after included religions, religiosity, ages, illnesses, and genders (Denscombe, 1998; Mason, 1996; Stake, 1995).
Inclusion criteria
Patient-participants had to fit all the criteria below:
Being with capacity.
Having made advance directives.
Having a long term condition.
Being at the end stage of their illness at the time of the interview.
Being aware of their advanced stage of illness.
Accepting audio-taping and the making of written notes during interviews.
Signing a consent form.
Exclusion criteria12
Having cognitive disability or extreme emotional distress.
Being non-fluent in Hebrew13.
Recruitment plan
Patient-participants – The LILACH14 organisation provided me with access to potential patients by agreeing to publish my recruitment letter in the organisation’s bulletin. The plan was to reach people who had made their ADs through 'LILACH', calling for those who met the inclusion criteria. If this option failed to recruit participants, I planned to approach patients' associations, such as ‘ATLS’ (the MND15 patients’ association in Israel).
Non-patient participants (other stakeholders) were envisioned to be nominated by the patient and to participate at their own consent.
12 Speech impairment that can make communication limited or difficult was not regarded as an absolute exclusion criterion, and was considered individually.
13 Israel is a state of emigration, and many senior citizens speak Hebrew fluently as a first language, although it is not defined as their 'mother tongue'. Therefore the criterion for inclusion is oral fluency in Hebrew and not its being the mother tongue.
14 LILACH - 'live and die with dignity association' in Israel, an association that has promoted the concept of ADs since 1987 and gives information and legal advice to its members, but also keeps a database of around 10,000 members' updated ADs.
15 MND (motor neuron disease) is a degenerative condition, which causes gradual paralysis, from the lowest parts upwards. When it reaches the respiratory system the person attained can be kept alive only on mechanical life support.
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3.4.1.1.2 The actual design
Recruitment
I used the LILACH bulletin at the end of December 2010. About a week later, on the 5th of January 2011, an overall 110 applications had been made. The dilemmas and challenges are discussed farther.
Actual inclusion and exclusion criteria
In reality there was a slight change in the inclusion and exclusion criteria. Due to time pressure at the time, it was agreed to add the antecedent of the willingness of the caller to nominate a family member and the physician. This would not guarantee the willingness of the latter to participate, but it could increase the chances of completing CSs. This criterion was applied to the last two patients recruited. One physician was on extended leave and could not be reached until the end of the data-collection period. Three other exceptions were:
One participant was included not because of his LTC, which was stable, but because he was over 90 years old, and this seemed to be threatening his life expectancy more than his cancer.
Being at the end stage of their illness at the time of the interview was retrospectively found to be inaccurate in one case. It was an advanced but stable illness, yet other reasons prevailed to keep the participant in the study.
Accepting audio-taping and making written notes during interviews was rejected by one participant at the last moment, when the interview was about to start, and yet the participation was not officially excluded. I wrote notes during and after the interview, but compared with the audio-recorded ones, the data I have is limited and less accurate.
Sample
The achieved sample is presented in Table 3 (next page), and described below.
People with long term conditions who made ADs (labelled hereinafter as
‘patients’ or ‘patient-participants’): Number of patient-participants included,
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N=10 (6 women, 4 men). Age range: 59 - 90. Marital status: 2 widowed 1 single and 7 married. Variety of LTCs: Cancer (5 patients); renal insufficiency (2 patients); respiratory insufficiency (2 patients); cardiac insufficiency (1 patient); neurological degeneration (2 patients). Three of the patients had multiple LTCs.
Non-patient participants were nominated by the patients, and were included upon both the patient’s and their own consent. The sample consisted of relatives and physicians and in one case a Rabbi. Relatives (N=9: 4 children, 3 spouses and 1 cousin); Physicians (N=7) included: four who were nominated by the patients (3 family physicians and 1 specialist physician) and three others who were recruited in other ways. The rational for recruiting physicians outside CSs was that four out of ten optional interviews were viewed as insufficient. Moreover, it was felt that the medical voice would be biased by the fact that the participating physicians were the ones who seemed more comfortable with discussing ADs and EoL issues, while the evidence of Bentur (2008) showed the discomfort of physicians in communicating with patients about these matters (Bentur, 2008). In order to give other ‘voices’ a chance, three medical managers were interviewed, from three different inpatient services caring for people with long term conditions, in a large hospital where I used to work. Thus, physicians who are based in another (inpatient) setting and are quite often exposed to EoL decisions shared their experiences regarding ADs. Similarly to the two patients who were not part of the CSs and contributed to the sample of patients, these interviews contributed to the sample of physicians.
During the primary conversations with applicants over the phone, neither nurses nor lawyers were identified as key figures. Before any interviews had started, cases were restructured to comprise: a patient, a relative and a physician (Figure 5, page 49).
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Table 3: Case studies (CSs) – summary of participants’ information (participants appear in pseudonyms)
Participating figures age Profession\ occupation education LTC
CS1 Patient (Noa)* >70 Education B.A. Multiple Sclerosis
Husband (Ben) >70 Administration High school
Physician (Dr. Yahalom) >50 Medicine - family physician (GP) MD
CS2 Patient (Meira) >80 Engineering BSc. Renal failure
Daughter (Lea) >50 Academia B.A.
(Physician) ---- Refused by the patient --
CS3 Patient (Naomi) >50 Academia PhD COPD
Cousin (Carol) >60 Art B.A.
Physician (Dr. Barda) >60 Medicine - pneumologist MD
CS4 Patient (Yarden) >60 Health care profession B.O.T Colon cancer
Son (Yagil) >30 Health care profession academic
Husband (Koby) >60 Administrative High school
Rabbi (Nakdimon) >50 Clergy Rabbinical studies
GP (Dr. Shalom) >40 Medicine - GP academic
CS5 Patient (Omri) >80 Administration Certificate Multiple LTCs
Daughter (Vicky) >60 Education M.A.
Physician --- Refused --
CS6 Patient (Shelly) >70 Health care profession certificate Colon cancer
Son (Deckel) >40 Business B.A. +
Physician --- Refused by the patient --
CS7 Patient (Dov) >90 Agriculture certificate Prostate cancer + age
Son (Yoni) >50 Engineering certificate
Physician (Dr. Paz) >40 Medicine - GP medicine
CS8 Patient (Debby) >60 Retired (printing) High school Renal cancer
Husband (Alon) >60 Retired (administration) certificate
Physician --- Was in a long leave --
Patient 9 Adam >60 Agriculture High school MND
Patient 10 Ehud >80 Health care profession academic Leukaemia + bladder cancer
Physician Dr Agmon >60 Medicine - neurology medicine
Physician Dr Azriel >60 Medicine – general medicine medicine
Physician Dr Ash >50 Medicine - nephrology medicine
* Died during the data collection period
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Yet, in reality, there was inconsistency in the composition of cases, as can be seen in Table 3 (page 48). Of the eight case studies formed, three were formed according to the plan (comprising a patient, a relative and a physician);
four included only a patient and a relative; one case included an additional participant such as a Rabbi, who was included due to the relevance of his involvement with the patient’s AD.
Figure 5: Overview of the qualitative phase - ‘multiple-case study’ design
Interviews
Most interviews were one-to-one in-depth interviews. Two included the spouse of the participant, and are discussed later. All interviews were semi-structured, using open-ended questions, and all but one were audiotaped and transcribed verbatim. Most interviews took place at peoples’ homes. Physicians were interviewed in their work places (except one home interview). One relative was interviewed in a café at her request.
The duration of the interviews with patients ranged from less than an hour to nearly three hours, mostly lasting over an hour and a half. Interview time with relatives ranged from between half-an-hour to two hours. The option for more than one interview was suggested to patients and to relatives, at the end of the interview, but was not realised. Interviews with physicians ranged from
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half-an-hour to one hour. Interviewing physicians, who were generally very busy, demanded extreme flexibility.
Ethical approval
The study received the approval of the ethical committee in Israel (application number 0188-10 RMB, see Appendix B, page 284)16.
Ethical issues were addressed and discussed with my supervisors and with participants at each and every meeting, to assure that all the ethical aspects that were planned were indeed protected. All the participants signed their consent to participate, before the interview started, and after having had stressed to them the option to refuse or stop the interview at any point, without needing to explain anything (see information sheet in Appendix D, page 286).
At the end of each interview with patients and with relatives, I suggested that if the content of the conversation had provoked any distress they should seek support. I also invited them to call me if they wanted to discuss any issues arising from speaking with me, so that I could signpost to support resources.
This was addressed in the consent forms as well. At the end of interview, a few of the relatives disclosed to me that prior to the meeting they had been a bit nervous about meeting me to discuss ADs, but that the conversation, although not easy, had actually relieved the burden.
One participant was concerned that the refusal of his physician to participate would influence his participation or harm the research and this caused him unnecessary worry. I was able to reassure him that this would not occur.
Other ethical issues that appeared during the field work are explained later.
16 The framework of Integrated Research Application System (IRAS) was used to prepare the ethical application.
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