She needs to be a doctor, a priest, and a social worker all rolled into one: that's how Lia van Zuylen sometimes feels when a palliative care cancer patient comes into her consultation room. Many of the topics these patients want to talk about have nothing to do with their illness. "This morning I spoke with a patient who will probably die within a year, but who has a piece of land in France that they need to sell. 'How will I manage it, Doctor?' Well - what can you say? I have no more idea than he does, but it's something he's struggling with. That piece of land is important to him; he wants to leave it in good hands."
Van Zuylen sometimes feels powerless to help when talking with patients who will no longer recover. "It's first and foremost a matter of time. I only have a given amount of time for each patient, and it's just not enough time to do everything. And sometimes it seems as if we doctors have to solve all someone's problems. I'm here for a patient's medical problems, but they will also discuss spiritual issues with me, for instance. Imagine: you were raised religiously, but drifted away from the church, and now you're afraid about what might happen to you after your death. Some patients really suffer from that. While these are not medical questions, they can have a real influence on how you feel." Lonneke van de Poll is quite aware that cancer care workers like Van Zuylen are consulted by incurably ill patients almost every day. However, little is known about how these patients experience their quality of life and quality of care. "That's because hardly any research has gone into it. We do lots of research into the quality of life in cancer patients undergoing treatment; some of those patients have to fill in 'quality of life' questionnaires four or five times. But as soon as a patient has metastasised cancer and will no longer recover, we stop asking questions. That's rather strange."
Van de Poll explains that this is because it is often assumed that this is a difficult group to approach for research purposes. "These patients are in the last phase of their lives; they might be vulnerable, and easily stressed. It feels almost unethical to bother them with all kinds of questions about how they feel, and what they feel to be important in their last stage of life. So we don't even try."
But this is changing. The eQuiPe study, which was launched in 2016, is the first study to do large-scale research into the quality of life in cancer patients in the palliative care phase, and in their relatives and carers. "It's partly on the initiative of Roparun, a foundation that focuses on this group of patients. They asked IKNL and me to come up with a research proposal, and that was the start of this study, which Roparun is funding." Besides Van de Poll and Janneke van Roij, Dr. Natasja Raijmakers (a palliative care researcher with IKNL and the Netherlands cooperation for Palliative Care (coöperatie Palliatieve Zorg Nederland, PZNL)) is closely involved in this research. eQuiPe is a national, prospective, observational cohort study of terminal cancer patients in the palliative care phase, together with the relatives closest to them. Van de Poll explains: "We ask them about their experience of the quality of care, as well as their quality of life; these are the two dimensions we're interested in. Naturally, our goal is to learn from their answers, and to improve the care we offer to this patient group and their relatives and carers."
eQuiPe has now been running for over two years. The concern that this was a group of patients that would not be easy to approach for research purposes turned out to be unfounded, says Van Roij. "There are now [as of 1 July 2019] more than 1000 cancer patients and over 850 relatives taking part in the eQuiPe study. We'll continue to approach new patients for this research until the end of 2019. Our target figure is 2000 patients, but if we reach 1500 we'll also be happy." Over 40 hospitals are now also taking part in eQuiPe. Van de Poll: "That's almost half of all hospitals in the Netherlands. It's a wide variety, too, from regional hospitals to academic centres, and they're all over the country. We're still getting phone calls from doctors asking whether they can join the study. I've never seen anything like it. With this research we'll soon be able to present a national picture of the experienced quality of life and quality of care amongst these patients."
The high participation rate of therapists and hospitals in this study reveals caregivers' need to know more about the quality of life experienced by these patients. Van de Poll: "That's because care practitioners feel unprepared. They want to offer their support, but we have very little knowledge about what kind of care is needed at which moment and by whom. Doctors want to understand this better. That's why they're keen to take part in this research, and why they've put their patients forward for inclusion in such large numbers. We're adding about 100 new patients every month; it's incredible."
After a patient has given informed consent to take part in the study, Van Roij is given the patient's name and telephone number by the doctor of the participating hospital. "Then I get in touch with them directly. Sometimes it's just the patient who takes part in the study, and sometimes it's just the carer, but it's usually both. The motives can differ, but what they often tell us is that they want to bequeath something useful for other cancer patients. They hope that their experiences will help future patients and relatives to deal both with the disease and with the last stages of life." The patients and relatives fill out a questionnaire every three months, with questions on their experience of the quality of care and the quality of life. Van Roij: "The questions on their quality of life, for instance, ask about their physical function, their emotional and spiritual lives, and their social lives. We also ask them how they are dealing with this final phase of life: what kind of support they are getting, and what issues they are struggling with. With regard to the quality of care we want to know how patients and relatives experience their contact with caregivers, how doctors and patients take decisions together, what patients' wishes and care needs are, and to what extent caregivers are meeting those wishes and needs."
The three-monthly questionnaires yield information about the entire palliative care phase, from beginning to end. Van Roij: "We hope to identify the changes that occur over time. The nearness of death can make a difference; when you only expect to have a short time left to live, you might have different wishes and care needs than when you can look a bit further into the future. We want to get a clear picture of these differences."
This is why the researcher sends the questionnaire to the family carer once again between three and six months after the death of their loved one. Van Roij: "We ask them to look back at the patient's last days. How were they? What was their experience of the quality of care? Also: what was the quality of their death? Did the patient die just where they wanted to be? Were the bereaved offered good aftercare? In this way we hope to be able to sketch a complete picture of the whole palliative care phase."
Van de Poll adds: "For the same reason we hope to be able to identify patients with different cancer diagnoses and different backgrounds. That's why we want the study to include at least 1500 patients - so that we can arrive at some valid scientific conclusions about different subgroups of patients." The researchers regard it as self-evident that relatives and carers be included in the eQuiPe study. Van Roij: "They, too, are confronted with the patient's terminal illness. This was also shown in the qualitative interviews we held before carrying out the quantitative study of a group of patients and their relatives. It was clear that relatives often struggled with such questions as: how can I help my partner without always having to talk about their illness? Sometimes there are discrepancies in experience between patient and partner; for instance, the partner might feel that the patient should put their financial affairs in order before they pass away, while the patient keeps putting it off because they are not yet emotionally prepared to do so."
Besides these differences in perspective the eQuiPe study also examines the 'dyadic coping' behaviours exhibited by the patient and partner. Van Roij explains: "How do partners jointly negotiate the illness process in the final phase of life? How do they try to support one another, and meet the other's needs? The better we understand how interactions between patients and partners occur in this final phase of life, the better caregivers can take account of them."
Van Roij hopes to be able to publish the first findings of the quantitative eQuiPe study in early 2020, but several things have already caught her notice. "For instance, the qualitative interviews made it clear that patients and relatives feel they have to deal with lots of different caregivers. They would prefer it if there were just one fixed practitioner, or case manager, who kept track of the course of their illness. They also attached importance to a good personal relationship with their doctor; they wanted a doctor who showed empathy and sympathy. This might not be earth-shattering news, but it shows there could be some room for improvement in caregiving."
Van Zuylen is pleased with the eQuiPe study. "I see a growing interest amongst doctors to look beyond their patients' purely medical status, especially in the younger generation. They're more interested in seeing the patient as a whole person. And there is increasing attention for palliative care, both in society and in the medical profession, as has been shown by their engagement in the eQuiPe study. I share their engagement, and I look forward to seeing the study's initial results."
"With this research we'll soon be able to present a national picture on the experienced quality of life and quality of care amongst these patients."
Source: Oncologie Up-to-date