Chapter 4 82 palliative care service, those with an early referral to a palliative care team visited the ED less often and were less often hospitalized.31 It thus seems that when palliative care is integrated into oncology care, ST-patients are at a lower risk of aggressive end-of-life care. In our study, limitations on LSTs were seldom discussed with HM-patients and remarkably, if it was discussed, it was often explicitly stated in their electronic patient dossiers that there were no limitations on LSTs. A recent integrative systematic review provided more insight into the aspects of this ‘curative mindset ’: haematologists feel uncomfortable with hospice-referrals and discussing approaching death with patients and family; disease-progression is considered as personal failure; and they are concerned that mentioning palliative care early in the disease trajectory might scare patients and their relatives.6 A qualitative study by Prod’homme et al. showed that end-of-life discussions are avoided by haematologists as long as cure is possible; these discussions are perceived to damage the doctor-patient relationship, especially when the patient ’s prognosis is uncertain.32 In addition, haematologists interpret palliative care more often as end-of-life care than medical oncologists do and are less used to involve a palliative care specialist than medical oncologists.33 It is known that if HM-patients are referred to palliative care, it generally occurs very late in their disease trajectory.3,7,11 Although a curative care approach towards HM-patients could be appropriate, the way it is currently practiced discourages timely initiation of a palliative care approach and conversations about the end of life. El-Jawahri et al. reported that 27% of the hospital-admissions in AML-patients could have been avoided.34 Reasons were: being discharged too soon after the previous admission, visits for problems that would have been manageable at home and the lack of timely out-patient follow-up appointments. These reasons are starting points for initiating a palliative care approach to avoid possible aggressive and harmful treatments in vulnerable patients. Our study suggests that in many patients the ED-visit marked deterioration and a transition in disease trajectory and often even the start of the dying phase. After the EDvisit or following hospital-admission, limitations on LSTs were discussed and documented in 73% of the ST-patients and 53% of the HM-patients. Although efforts were made to discuss these LSTs, still 36% of the HM-patients were subsequently transferred to the ICU. This is in line with literature demonstrating that HM-patients are frequently and more often admitted to ICUs than ST-patients (39% and 8%, respectively).2 Failure to recognize patients in the end-of-life phase makes them at risk of receiving aggressive treatments in the hospital and may even result in death: in our study, 33% of the HM-patients died in the ICU, compared to 4% of the ST-patients (p<0.0001).2 Sixty-nine percent of our HM-patients died in the hospital and 40% died as a result of treatment toxicity. Howell et al. showed that, compared to ST-patients, HM-patients had a twice higher risk to die in the hospital.22 Our findings confirm that HM-patients have unpredictable disease trajectories that can
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