Patient retains control until the final stage of life
Discussing HOPEVOL with Saskia Teunissen: A three-year study on the quality of Dutch hospices.
We all want to continue living at home for as long as possible, and preferably die in our own home. Unfortunately things often work out differently in practice. The informal care that is necessary is missing, the domestic environment is inadequate, or requisite healthcare is overly complex for home care. Patients at the palliative stage who are no longer able to remain at home can be admitted to a hospice.
Hospices are homes where people with a life expectancy of less than three months can spend the final stage of their life. Each year 20,000-35,000 people die.
Due to the fact that a hospice is not a legally protected title, anyone can set one up and there is no mandatory registration either. We have three types of hospice in the Netherlands:
1. The so-called ‘bijna-thuis-huizen’ (‘almost-at-home houses.’) These are small hospices, often started as a citizens’ initiative, where between two and four patients are staying. There are a mere 100 of these in the Netherlands.
2. Hospices within nursing homes. These are situated on a separate ward within a nursing home or in a separate building on the grounds of a nursing home. There are 150 of these in the Netherlands.
3. Independent high-care hospices. There are around 50 of these. They are distinct in that they hold certification that is renewed every three years on the basis of an audit.
Saskia explains: ‘At international level we’ve agreed that people in palliative care aren’t just regarded as people with a disease but as people having to cope with their impending death. Your hope is that the quality of life of people in its final stage will be preserved for as long as possible due to a combination of suitable care and retaining control over the care they are receiving.’
Fly on the wall
HOPEVOL is a three-year, nationwide study being financed by ZonMw, with the aim of analyzing current hospice care and increasing control for future patients.
The project consists of a comprehensive examination of files, interviews with care providers, policymakers, and patients and their next of kin, as well as participatory observations - the ‘fly on the wall’ method.
This triangulation is intended to provide an answer to the questions:
• What is the course of the disease?
• What problems is the patient faced with?
• How can these problems be subdivided into the physical, psychological, social, and existential?
• What does the care look like in relation to quality of life and death?
According to many primary care physicians involved, only five percent of people in hospices have problems in multiple areas and therefore require complex care. Saskia: ‘Yet we’re assuming that it’s not five but 50%, and we’d like to know whether that’s correct.
Another point is that a great many hospices are organizational model-driven. We’re keen to know whether this means that the quality of care is dependent on the type of hospice in which you’re staying and isn’t determined by the problems, wishes and priorities of the patient.’
The HOPEVOL project kicked off on October 1, 2017. ‘The project is evoking a lot of emotions among the hospices,’ states Saskia. Hospice teams are nervous of their own performance being criticized. What’s more, they’re afraid of medicalization.’ Saskia is also expecting emotional responses on the part of society, such as: ‘You can’t subject people who are dying to a study.’ In practice, however, Saskia’s experience is that people in hospices are indeed willing to cooperate if they are approached honestly and respectfully.
Objective of the study
The results of the three-year study will provide insight into the complexity of hospice care. Based on this insight and the wishes of patients and next of kin, the team cooperating nationwide will issue advice on the criteria for the quality and future set-up of hospice care. Furthermore, interventions required to render hospice care more wish-oriented will be made.
Saskia concludes: ‘The results of the study will enable us to come to the table with all umbrella organizations, insurers, and primary care physicians to shape the future set-up of hospices from 2020 onwards. This will be a tough process too, but one with an important goal: to improve the quality of life of people in its final stage.’