I still remember that room covered with paintings. It was the room of a person with a brain tumour who, in the terminal phase of his illness, had awakened his artistic vein and, with the support of the volunteers, had started painting. Those drawings related to the quality of life, the multidimensionality of needs and the personalisation of solutions that are the foundations of palliative care.
In hospices the holistic care of the terminal patient and his needs, not just physical but also the spiritual and social ones, requires the continuous search for structural, organisational and communicational solutions. These differ depending on the patient’s age, his – unfortunately incurable – pathology and his background of experiences. The spaces should look as little as possible like medical areas and they should feel welcoming. They should evoke that tranquillity and warmth that are essential to live the last part of life with dignity, reflecting on the past, meeting friends and opening a dialogue with family members around unresolved matters. The spaces should also help the patients of the facility to share experiences, interact and form bonds with each other so that they can support one another. The patients coming to the hospice are quite often lone individuals and having the company of others becomes an antidote to their loneliness. Every bedroom in the hospice should be equipped with a small kitchenette to allow food preparation and the space to host a family member.
Special attention should be placed on the single bedrooms of the hospice ensuring that they offer en-suite bathroom facilities so that a family member can stay over. The other spaces of the hospice, perhaps less common for healthcare facilities but very relevant in their function, are for example a library, a living room and a lounge where it’s possible to listen to music, play an instrument or paint. Outdoor spaces are also really important because staying in the same room for days or months on end does not create the premise to support individuals in the best way. Green spaces and interacting with nature add value, both in terms of pleasure for the senses and therapeutically.
From theory to practice
In theory hospice facilities should have multiple features but from a practical point of view there are as many challenges to face. Hospice facilities were created in Italy with Law no. 39 of 1999, which outlined the citizens’ right to access palliative care and included a national program to build residential facilities through a fund of roughly 206 million euros. However, many hospices were designed by reconverting pre-existing buildings thus limiting the architectonic possibilities. Another limitation was imposed by the required standards, outlined in a regulation of 2000, that defined the technological and structural features, and, in general terms, the organisation. These are dated requirements that should be updated and adapted in terms of the organisational aspects of the work.
A solution tailored to the patient and his family’s needs requires a multidisciplinary team formed by physicians, nurses, psychologists, physiotherapists, healthcare support workers, social workers, spiritual support workers and also voluntary organisations. It’s important to ensure that they receive a solid preparation starting from their university education and a relevant work setting. Spaces dedicated to mental health support services for individual patients or their families bring additional value. It’s also central to provide welcoming spaces where the team can work together, rest, let off steam or cry – because there’s also a need for that in our work.
The spaces, the colours and the greenness are essential aspects of personalised care. However, they become so vital because of the relationships and the communication between the patient, the family members, the physicians, the healthcare support workers and the volunteers, and last but not least, because of the sensitivity and generosity of the carer that, while looking after the patient, tries to identify his needs, whether expressed or not, through dialogue. Healthcare is based on recovery and on lifesaving interventions but life also includes suffering and death, and hospice facilities must be equipped and well-trained to take care of that, through technologies, professionalism and humanity. There’s the concern over creating familiar spaces on one end and the organisation, the staff training and the ability to get engaged and passionate about the work on the other.
The spaces, the colours and the greenness are essential aspects of personalised care but they become so vital because of relationships.
Outside the rooms
Each certainty we had about the function of the spaces crumbled during the Covid-19 emergency. We had to make drastic decisions to lower the risk of infection and to keep guarantying top care and assistance in such a “delicate” facility like the hospice. We gradually interrupted visits, trying to compensate for the absence of physical closeness with video calls so that patients and families still had the chance to “be together”. Only in situations where the patient got worse one family member at a time would be allowed to enter the room wearing personal protection equipment. These were painful decisions for everyone – for them and us workers alike.
Covid-19 also challenged us with the problem of ensuring adequate palliative care for the infected patients who were admitted in hospitals or residential care facilities. In many cases these patients with interstitial pneumonia have respiratory failure that generates intense dyspnoea, which can lead to the feeling of suffocation. Patients experience fear and anxiety, and often die in an ill-equipped space, without dignity. In light of these considerations the Italian Society of Palliative Care, the Italian Society of Anaesthesia, Analgesia, Reanimation and Intensive Therapy, and the Federation of Palliative Care published a position paper asking healthcare facilities to activate, during the treatment of Covid-19 patients, palliative care networks or palliative care services already existing in the region or in the individual local areas.
This necessity goes beyond the time of the Covid-19 emergency. The progressive ageing of the population will require an increased demand for palliative care services that can’t be met through hospice facilities alone. The palliative care practices and philosophy will necessarily have to be welcomed also in residential healthcare facilities. In Italy, even though Law no. 38 of 2010 required the formation of a palliative care services network for the different ward, hospital, residential and home-based settings, the implementation of such a model is limited by the lack of relevant professionals. Institutions must become aware of this vital necessity.