Description

In so-called Western societies people are dying at a much older age than ever before. Most people die of chronic degenerative diseases, illnesses that at an advanced stage can no longer be cured and often require ongoing nursing care. Nevertheless many medical options are still available to delay the progress of such illnesses and relieve suffering. The period of time in care and of dying grows increasingly longer and with it the uncertain goal of remedial-medical care. Approaches to medical treatment veer between the opposite extremes of “fighting a battle against death” on the one hand and “allowing the person to die” on the other.[1] In the meantime, independent techniques of palliative medicine have been established that aim primarily to relieve symptoms and provide psychosocial care to improve conditions for the dying person. This new special discipline brings together the fields of medicine, nursing care, social work, theology and voluntary activities built around the concept of a hospice. Hospices can provide both outpatient and inpatient care and were conceived with the aim of helping people face death as positively as possible.

This shift in the form of care provision for the dying and in attitude in general did not materialise out of nowhere. Up until the mid-1980s the topic of death was still generally taboo and fraught with inhibitions. Today, the topic of care for the dying is discussed increasingly openly – although too often in connection with legal regulations or the scandalised reporting of euthanasia or neglect in old age. However, whenever the topic is raised, the mention of hospices as institutions synonymous with dying with dignity follows soon after.

That hospices offer the best possible institutionalised care in the last phase of life is no longer called into question, neither by representatives of charities and the church, who up until the 1980s were concerned that hospices may turn into “ghettos for the dying”, nor by doctors who feared their patients would be “abandoned”. In fact quite the contrary: hospices are both open and public places, as I was able to verify repeatedly in an empirical study conducted in 2001 and 2002.[2] Nevertheless, most people have little idea about what is involved in providing care for the dying. An example from my observation studies illustrates how hospices work, what patients can expect and what kind of difficulties and problems commonly need to be overcome.

A good death – an example

Our example concerns Mr Bauer, a 95-year-old leukaemia patient. As Mr Bauer is admitted to the hospice, his condition is relatively good: he is without pain and can move around the hospice on his own. His main problem lies elsewhere: originally his daughter was supposed to take care of him in return for him financing the building of her house. However, when the time came, his daughter changed her mind. As a result, Mr Bauer is forced to live in the hospice and is accordingly aggrieved. There is nothing the nursing staff can do to appease him. He complains to the doctor treating him, makes the staff explain his medication time and again and obstinately asserts his independence. Nevertheless, the sisters and staff patiently fulfil his “special requests” and discover that he is, in their own words, a “fascinating person”. While talking to him they discover that Mr Bauer was a “talented dancer” and passionate chess player and soon afterwards they initiate a game of chess with him. A few days later, Mr Bauer is so “uncooperative, stubborn and difficult” that his carer loses patience and reprimands the patient. The next day Mr Bauer does not feel well, complaining of sharp pain, dizziness and nausea. He is generally disorientated and miserable. At the end of the shift, his carer reports that “he now no longer refuses to be helped”. And, as the carers later note, Mr Bauer “wept bitterly”. His condition worsens and he no longer gets out of bed. The hospice calls his daughter, who until now had stayed out of things. To begin with she watches the carers do their business and sits in silence for a while with her father. The next day one of the nurses asks her to help hold her father while he is being washed. At the end of the shift the nurse describes this as a kind of embrace, which the father also reciprocates, an act that can be understood as an unspoken “reconciliation”. The daughter now spends more time with her father and they even talk to one another. In the following night, three weeks after entering the hospice, Mr Bauer dies peacefully in the arms of a carer.

Supporting the identity of the dying person

From the viewpoint of the hospice, Mr Bauer’s story can be regarded as a successful example of the care they provide. But what does successful mean in this context and how is this achieved? As in many other institutions, hospices also employ a systematic programme of techniques. Specifically, this includes biographical work with the patient whereby the staff constantly seek to learn more about the patient’s sense of identity by watching out for references to his or her past. This is particularly effective for patients who have spent long stretches in hospital with various illnesses or who previously lived alone at home. Communication also encourages patients to express their wishes, with particular emphasis on their immediate well-being and on pleasurable experiences that the patient can enjoy then and there. Expressing one’s wishes, even small wishes such as playing chess, becomes an act of self-affirmation. Such encouragement is not only expressed verbally but also through the practice of caring, which generally goes far beyond the necessities of hygiene. These “wellness” offerings in the broader sense include morning care programmes, massages with aromatic oils, bathing, accompanied walks around the hospice, joint meals etc. The care practices themselves are aimed at reinforcing the identity of the patient; the emotional care and attention provided by the staff has to do with more than just cleanliness, it is valuable in itself. Care and treatments that are stigmatising are avoided where possible, and when they are necessary, for example the use of a feeding cup or incontinence nappies, then with as little distress to the patient’s personality as possible. Having to be nursed reminds patients enough of their frailty and of the fact that they are dying. The staff themselves rarely address the topic of the patient’s death openly and directly, although when patients are admitted the doctor will have spoken to them about the incurability of their illness and the time they can expect to live. The doctor’s explanation is, however, generally speaking a rational-cognitive process that is often not emotionally “absorbed”. Many patients still harbour hopes of recovery and occasionally have quite unrealistic expectations. As Cicely Saunders (1918-2005), founder of the modern hospice movement, always said, the aim of a hospice is “not to prolong the days of your life but to improve your quality of life for the days that remain”.

“The process of dying”

The physical treatments undertaken in hospices can be regarded primarily as a concerted programme of socialisation. This kind of care is supported by and indeed made possible by the programme of medical therapy, as can be seen in our example too. Before the patient was admitted to the hospice, he had received a blood transfusion. The hospice doctor was somewhat sceptical, citing that although patients feel better immediately after such treatment, they feel that much worse a few days later. And indeed, Mr Bauer did not feel so well three days after being admitted, a fact which the staff attributed to the effects of the transfusion subsiding. The hospice does not try to counter or even fight the deterioration of the patient but rather to make the downward trend as bearable and smooth as possible. The practice of achieving “highs” at the cost of sudden “lows” is avoided. The aim is to anticipate and minimise the suddenness of downturns, all the while weighing up the current well-being of the patient against the prognosis of deterioration. Care provisions, medical interventions and communication with the patient aim to synchronise the mental condition of the patient with their progressive physical deterioration. When the time comes, the patient dies peacefully. This controlled process of deterioration is in some cases thwarted, for example when patients are confused and bewildered or suffer from dementia or as a result of non-treatable pain or through the outward spread of metastases. Here the nursing and care staff can only try and master the uncertain process of deterioration, and sometimes the only consolation is the knowledge that one has done the best one could. Two key dimensions determine the nature of a hospice: the focus on biographical identity and the attempt to control the course of dying as a peaceful and pain-free process.

The design of the living environment

As with any health care and social welfare institution, a hospice needs to outwardly represent its function while at the same time be a private retreat for patients and their relatives. Its architectural design can contribute to reconciling these opposing functions. For acceptance by the general public, it is important that the hospice is embedded in its immediate urban and historical context. If built as part of a hospital complex it can refer to the historical dimension of medical and health care. If extensively-glazed it can symbolise openness towards its surroundings. Openness is also an important criteria for the patients in order not to feel excluded. This can be achieved by providing ample glazing, conservatories, sheltered interior courtyards and terraces and floor-to-ceiling windows that allow bedridden patients a view of their surroundings. A further dimension of openness is the use of spaces within the hospice for exhibitions, small concerts, readings and so on. Foyers, corridors, common rooms, kitchens, “living rooms” and team rooms can be designed as a hierarchy of spaces that become progressively more private. More intimate spaces still need to be created that, while not entirely enclosed, provide patients and relatives with a spot to retreat to and be undisturbed. As places for leading one’s everyday life, hospices should fulfil normal expectations with regard to domestic privacy.

The process of dying is accompanied by a simultaneity of quite different emotions. Joy, sadness, reflection and sincerity must all be accounted for in the design of the spaces so that there is place for them as everyday means of communication. Open living areas, kitchens or kitchen-living areas and clearly defined sitting areas in corridors, on terraces or in the garden offer opportunities for patients, relatives and staff to come together. Typical communal activities such as mealtimes, watching television, reading and resting should take place in semi-private, sheltered environments. In addition to facilitating everyday communication, the hospice also contains memento mori, symbolic representations of death reminding people of their own mortality and referring to the purpose of the hospice. Although not continually verbalised, death is ever present and there are sufficient opportunities for reflection and contemplation.

The patient’s room is the core of the private sphere and should only be interrupted by nursing care and treatments. In addition to its functional requirements the room should provide opportunities for the patient to personalise the space. Furniture, including cupboards, should be movable and where possible there should be enough room for patients to bring smaller items of their own furniture with them. Sideboards should be visible and reachable from the bed. Family photographs, keepsakes and personal items provide points of contact and make it easier for staff to relate to the patient and make suggestions accordingly.

The overall design of the hospice should be able to accommodate entirely different personal projections – for some it is a home, for others a hospital or care home, for others a hotel. In most cases, however, patients know that they are in an institution with its own set of rules and regulations, even when these are more oriented towards their needs. It is also important to remember that most patients do not stay for very long in a hospice. Almost 70% of patients die within three weeks.[3]

Perspective on other types of care facilities

The question arises as to whether the model of care provision and ideology behind the hospice can also be of relevance to other institutions where people die. In a hospice, all the institutional provisions are directed without exception and for all patients towards accompanying the process of dying, even when the day-to-day work concentrates on upholding the identity of the person and improving their well-being. The fundamental premise is that all attempts to cure an illness are discontinued in favour of measures that alleviate its effects; in a hospice all patients are therefore dying persons. Although mortality rates in old people’s homes and nursing homes are increasing, these institutions are not primarily oriented around the process of dying to the same degree as a hospice is. Individual aspects of the care provided in a hospice – symptom-oriented medical care, attentive care and support, communicative orientation, symbolism in the interiors – can most certainly be transferred to other institutions. Nevertheless, a key difference remains: the ideological position of a hospice is unequivocal, and both patients and professional staff share an awareness of the central aim of being able to die with dignity. This commitment is not as clear-cut in other kinds of institutions. In a nursing home a member of staff may need to leave their watch over a dying person in order to deal with an emergency with another patient. Here other necessities – not least to save lives – take precedence over the provision of care for the dying. However, there is one key aspect of the hospice ideology that can without doubt be transferred to other realms: the demonstration of solidarity with and affection towards the critically ill.

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Originally published in: Eckhard Feddersen, Insa Lüdtke, Living for the Elderly: A Design Manual, Birkhäuser, 2011.