Design for the end of life asks for an integrative approach, in which (relatives of) the terminally ill patient, religious experts, medical staff, designers and philosophers all play an important role. Finally, all involved only aim to provide their patient, family member or friend with “What really matters at the end of life” (B.J. Miller, 2015).
Design has the capability to enhance the quality of life and improve health care from a different perspective. It is always the intention of medical professionals to cure diseases, but in some cases this is impossible. Thereby it also becomes increasingly important to design for the end of life and support people towards a worthy end. At the TU Delft the efforts in this topic are focussed on palliative and hospice care. Palliative care specializes in maintaining the quality of life for patients with life-limiting diseases. Hospice care guides patients towards the end of their life.
Palliative and hospice care consist of four different aspects. The physical aspect is the foundation of the care; to ensure that the patient is not suffering, feels as comfortable as possible and has no pain. The emotional aspect deals with anxiety, depressions, anger and other emotions. The social aspect addresses the people around the patient and the evolvement of the patient’s social life. The spiritual aspects deals with questions like “What did my life mean to me?” and “What is the meaning of life?”.
How can design be of value in palliative and hospice care? An obvious answer is by improving the physical comfort of patients. Design of the beds, rooms and the products they use can have a tremendous impact on their emotional well-being. Two concepts which illustrates that a product could improve the wellbeing of the patient are the “Mobile care seat for elderly in the last stage of their lives” (D. Unsal, 2012) and the “Long-stay support for immobile people in nursing homes” (Y.F. Chow, 2011).
The emotional design aspect plays an important role in providing direct solutions for the mental state of the patient. Digital companions like for example a robot dog can fulfill a social function and solve feelings of loneliness or isolation (J. Howard, 2017). However, emotional design can also aim to indirectly address the patient’s wellbeing by helping to provide good care, so patients and relatives can feel trusted by the caregiver. An example is Pallas, this product helps caregivers to deal with the issues and challenges of their demanding job (S.W. Klok, 2014). Thereby design can play a role in optimizing (administrative) processes in palliative care, helping nurses and doctors to provide more personalised care.
Lastly, an important aspect in end of life is spirituality. By developing tools and products, design can play a role in facilitating conversations about spirituality; helping patients to find peace of mind. Providing a (neutral) place for prayer and respect traditions such as specific food or handling of a body after passing away, is also of great importance. Design can help healthcare professionals to take into account different religions and their beliefs in matters of terminal care. For example, before making a final decision for a muslim patient it might be important to not only consult the relatives, but to also include spiritual counsel by an ethicist or Islamic scholar.
Conversations about end-of-life are a sensitive topic that touches upon the core of each culture. In recent years, especially in the Western world the discussion about the topic is opening up. As we approach this sensitive topic we must be careful not to step on each others toes. It is important to include people from all different disciplines in this discussion, to help think beyond healthcare or design. Design for the end of life asks for an integrative approach, in which (relatives of) the terminally ill patient, religious experts, medical staff, designers and philosophers all play an important role. Finally, all involved only aim to provide their patient, family member or friend with “What really matters at the end of life” (B.J. Miller, 2015).