The broad spectrum of unbearable suffering in end-of-life cancer studied in dutch primary care

The study was conducted in Utrecht, a city with a population of 235 000 people and 105 GPs. The inclusion criteria were (1) terminal cancer; (2) an estimated life expectancy of half a year or shorter; (3) mentally competent; (4) adequately fluent in Dutch; (5) expectedly living at home (most of the time) until death and; (6) having a GP as the primary responsible physician.

Complete case identification is recommended in palliative cancer care research [17]. Low physician recruitment rates (2%-49%) and over-restrictive gate-keeping [20‐22] are reported in primary care research in relation to a failing partnership between researchers and GPs [23, 24], indicating the risk of not indentifying all cases, or even a failing study. A methodological measure interfering with complete case identification is an a-priori exclusion of patients who are too gravely ill. Analysis of the recruitment barriers resulted in the conclusion that participation of committed GPs [23] and strict monitoring of newly eligible patients were essential requirements to realize complete case identification. Direct professional colleagues are without doubt committed participants, and therefore GPs were personally recruited throughout the city among professional colleagues of the first author (CDMR). A sufficiently large and dispersed GP sample was considered to serve a patient population representative of the city. Forty-four GPs participated, of whom 35 worked in eight group practices; 5 worked in three duo practices and 4 worked in solo practices. Eighteen of the GPs worked full time. The practice locations were dispersed throughout the city, with three fourths middle class and working class neighborhoods and one fourth deprived neighborhoods. Six GPs refused to participate. GPs identified eligible patients, informed them about the study, and requested whether a researcher would be permitted to explain the study. Consenting patients were visited within a week at their residence by a researcher, to explain the study and request definite participation. In participating patients demographic information was registered and the baseline interview administered, preferably in the first contact. Follow-up interviews were administered every two months at the patients’ residence or earlier, upon notice of the GP, if the general condition of a patient deteriorated.

A study coordinator was appointed to organize the recruitment process. To monitor the eligible population and stimulate recruitment, the study coordinator contacted the GPs every two months to request information on newly eligible patients. Characteristics of all eligible patients and reasons for not entering the interview study were registered. Patients were included from May 2003 until May 2006, follow-up continued until May 2007. Seventy six out of 148 invited patients (51%) entered the interview study. The main reason mentioned by patients (or family) for declining was a physical condition which unexpectedly deteriorated so rapidly that an interview was no longer possible (N = 27), followed by considering participation too burdensome (N = 20) and “don’t like talking” (N = 15). Another 110 advanced cancer patients were not invited by the GP, because unexpected rapid deterioration resulted in a too debilitated physical condition. The attrition rate in the interview sample was 8% caused by patients who stopped participating after one or more interviews. At the end of follow-up 8% of the patients were alive.

Age, sex and type of cancer did not differ between the interview sample and the sample who declined to participate. Depressed mood according to the GP was less prevalent in the interview sample than in the declining sample (5% versus 23%) [25]. The interviewers were the study coordinator (a physiotherapist) and a GP (CDMR); both were trained in interview techniques. The study protocol was approved by the Medical Ethics Committee at the VU University Medical Centre. Patients were clearly informed that they were free to decline from further participation at any time. The recruitment process is described in detail elsewhere [25].

Unbearable suffering is a subjective experience in which the suffering is so serious and uncontrollable that it overwhelms one’s bearing capacity.

Existing quality of life instruments were not suitable, because they frequently measure the intensity or extent of potentially suffering inducing aspects, but not whether suffering occurs. In the absence of a suitable measuring device, the State-of-Suffering-V (SOS-V) was developed: a quantitative instrument with a comprehensive design, measuring unbearable suffering in five domains. The development of the instrument, including analysis of validity, is described in detail elsewhere [26]. The instrument was required to include physical, psychological, social and existential dimensions of suffering [1, 2, 27‐31]. Assessment of suffering requires a framework of suffering [32], which was required to include the domain of medical signs and symptoms, to assess the position of traditional medical aspects in the spectrum of suffering. A framework consisting of the following five domains provided a practical, functional construct: (I) medical signs and symptoms; (II) loss of function; (III) personal aspects; (IV) aspects of environment and (V) nature and prognosis of the disease.

Sixty nine suffering inducing aspects were identified in literature and attributed to the domains. Specific physical cancer induced aspects were largely present, since they relate to specific interventions. Other aspects permitted a more general formulation. The domain of environment included (lack of) support and aspects of social interaction, such as experiencing to be a burden to others and experiencing symptoms to be embarrassing, resulting in withdrawal from social interaction. Fear of future suffering, due to either progression of symptoms, or impairment of strength to bear the suffering, constitute two aspects which are frequently mentioned in Dutch literature concerning EPAS.

The scoring system paralleled the dynamics of suffering: first it is asked in which intensity (or extent) an aspect is present and then (if present) in how far the aspect is experienced to be unbearable. A uniform 5-point scoring scale is employed, with a description of scores: 1-not at all; 2-slightly; 3-moderately; 4-seriously; 5-very seriously, hardly can be worse. The subjective nature of suffering demands scores to be provided by the patients. After rating the specific aspects it is asked to name and rate any missing aspects of suffering. Thereafter the patient is asked to rate overall unbearable suffering (same scale). The interview ends with four open-ended questions investigating sources of bearing capacity and other relevant experience: (1) what gave you the strength to bear the suffering; (2) did faith or life conviction provide strength; (3) have you witnessed serious disease of relatives in the past and how did this affect the present suffering, and; (4) what, if any, were positive consequences of the disease? Exact phrases of the answers were immediately written down by the interviewer. The reference period was the last two days. Field testing was employed patients in a few patients before the start of inclusion, which demonstrated that the patients understood the questions, and that the instrument was easy to administer.

The SOS-V was administered together with other instruments, which included the Schedule for Clinical Assessment in Neuropsychiatry (SCAN) [33] at baseline, as part of a study which also investigated depression [34]. Administration of the quantitative questions of the SOS-V most times was possible within 15 to 20 minutes.

A cross-sectional analysis was employed using the results of the last administered SOS-V in each patient, indicating suffering close to death. Unbearability for aspects of suffering was analyzed dichotomously, employing a cut-off score. Aspect with scores 4 (seriously) and 5 (very seriously) were defined unbearable. Descriptive data are presented. Sources of bearing capacity were analyzed qualitatively. All literal formulations of sources were compiled in a table, corresponding answers were combined, codes were assigned and the sources per patient over all interviews were assessed. Only sources with a prevalence of 5% or more are presented.

The studied interview sample consisted of 64 interviewed patients with follow up until death, of whom 46 died within 6 months after inclusion. In 4 patients no SOS-V could be administered, because of clinical deterioration. The last interview on average was 30 days before death (SD 17 days); in 23% the last interview was within 2 weeks prior to death; in 41 patients at least two interviews were administered.

The average age in the interview sample was 70 years (range 38–86), 52% were female, and the most prevalent cancer types were lung cancer (27%) and gastro-intestinal cancer (25%); 60% were educated beyond elementary school; 63% were living alone, 77% had children and 62% were religious (protestant or catholic). In the interview sample one patient suffered from a definite major depression [34].

Overall unbearable suffering occurred in 28% of the patients (26% serious; 2% very serious), with a mean number of 18 unbearable aspects for patients with serious unbearable suffering (score 4) and up to 31 unbearable aspects in one patient with very serious (score 5) overall unbearable suffering. Overall unbearable suffering was slightly present in 10% of the patients, moderately present in 25%, and was absent in 37%. Absent, slight and moderate overall unbearable suffering went along with respective means of 4, 6 and 13 unbearable aspects. The most frequent unbearable aspects (scores 4 or 5) divided over the domains of the SOS-V included: (I) Medical signs and symptoms: weakness, general discomfort, tiredness, pain, loss of appetite and not sleeping well (25%-57%) (Table 1), (II) Loss of function: impaired routine daily activities, impaired leisure activities, help needed with housekeeping and being bedridden (32%-55%)(Table 2), (III) Personal aspects: feeling dependent on others, not able to do important things, trouble accepting the situation and loss of control over one’s own life (27%-45%), (IV) Environment: relatives consider the suffering too severe (16%), practical loneliness (nobody present) (12%) and (V) Nature and prognosis of disease: fear of future suffering (17%). Two unbearable aspects were added: delayed income caused by insurance bureaucracy and the prospect of loss of beloved ones through death. The unbearable aspects were evenly divided over domain I and the collective domains II-V (Figure 1).

The most frequent sources providing strength to bear the suffering were “love and support (generally mentioned together) by family and relatives” (67%), and “faith and trust in God” (40%). Other frequent sources were: “optimism and positivity” (27%), “acceptance” (18%), “maintenance of daily routine” (18%) and “living by the day” (13%) (Table 3).

Eighty percent of the interviewed patients had previously witnessed relatives seriously suffering from disease; in 13% of the interview sample the experience resulted in increased present suffering (caused by increased fear of future suffering), while in 12% the result was increased confidence to bear future suffering (caused by witnessing a person who managed to deal positively with suffering). Thirty-eight percent of the patients experienced positive consequences of some kind in relation to their disease, such as growth of contact with beloved ones (52%), growth as a person (26%) and re-establishing contact with beloved ones (in present life) (17%) (data not in table).