How_Does_the_Place_of_Death_Affect_the_Experience_of_Dying_

When we talk of death and dying, most of us would hope to die after a long and healthy life, knowing that we were loved by family and friends and taking comfort that our estate were in order and that our dying wishes would be adhered to. However, in reality, this is rarely to case and often the circumstance surrounding our death is unavoidable and unplanned. I hope to demonstrate how the supposition of dying at home, where we are gifted some degree of dignity, is not necessarily preferable to death within the clinical setting of a hospital. Throughout history, medicine had been able to do very little to cure illness or to prolong life and death most frequently occurred at home. This has now been superseded by the institutional place of death – the hospital and other communal establishments that care for the sick. However, given the option, most people would choose to die in the familiar setting of their own homes with the care and support of their loved ones. Psychologically, those dying are more comfortable in a familiar setting and the home may offer a better environment for maximizing the quality of life that remains and for achieving personal closure, providing the ideal conditions in which dying persons are able to say their final goodbyes to family and friends. Here they can also live by their own schedules rather than those determined by intuitional policy. For example, patients in hospitals receive their meals according to hospital schedules, whereas individuals at home can eat when they feel hungry. This sense of control can help the dying person maintain emotional well-being during the last weeks or days of life. Whilst dying at home has its clear advantages, especially for the patient, there are also numerous drawbacks that face carers, the family and the health care team. For a patient to choose to die at home, the practicality of this happening without family is virtually impossible, for in order to die at home, there has to be adequate back up, and this is usually provided by a close family member, i.e. the spouse or child. The implications this has on the primary carer is that, not only do they have to cope with their own emotional and physical needs, but also of that of the patient, twenty four hours a day. As a spouse, partner or child we feel an innate obligation to care for loved ones but dealing with the welfare of someone who is terminally ill is a very personal and direct experience of dealing with death. Whilst most may view this task as rewarding, some will view it as a burden and will harbour feelings of resentment, anger and very occasionally violence. The actualisation of a terminal illness, especially in that of an aging relative, can be hugely detrimental to an already established household structure. The balancing act of caring for a dying person often means the carer’s life has to be put on hold, work and social lives take a back seat and the emotional pressure heaped upon a family can be immense, leaving deep rooted scars. The vulnerability of children, especially when interacting with a dying grandparent, who is possibly suffering from dementia, can lead to feelings of confusion and fear. The act of someone degenerating before you, especially someone deeply loved, can be too painful to witness, their suffering unbearable to comprehend. Thankfully for those fortunate to choose to die at home, they will hopefully be provided with the continuing support of a health care team and social services at their disposal. The provision of medical care at home, however, is not without its considerations. Whilst a health care team can provide daily care to a patient, even offering respite for the carer, the drain to resources both financially and physically is apparent. The continual turnover of staff can result in a lack of knowledge in complex medical issues, a failure in communication and, in emergency situations, medical intervention may not be immediately at hand. Death is a very diverse subject and in some religions and cultures, the act of dying at home is considered to be part of the faith or belief system. The element of control, namely to die at home, supports a death filled with reverence to one’s chosen devotion. In comparison, this respect for ethnicity is not always acknowledged where death within a hospital is unavoidable. As most UK hospitals are “main-streamed”, aimed at the masses, most religious and cultural observations are often ignored or simply not logistically tangible. The greatest advantage hospitals have to offer the dying is clinical competence, this includes both the management of the physical symptoms that are typical at the end of life - pain, fatigue and nausea, and the management of the psychological symptoms - anxiety and depression. Families benefit from the social support of being in the hospital and it also offers a more rapid sense of closure after a loved one dies, being able to leave the hospital after the death without having to revisit that environment. However, today’s medicalisation of death has come about as doctors direct and hospitals regulate many details of life, from birth to dying, sometimes excessively so. The dying process today has been extended by medical treatments controlling immediate causes of death that accompany such killers such as cancer and heart disease. Death within a hospital setting can be broadly divided into two, those admitted to a ward due to an ongoing medical complaint or those that fail to survive admission to the accident and emergency department. The obvious though, can be said about both scenarios in that a hospital setting can provide full medical facilities, trained medical staff, pain relief and the provision of life saving equipment, all of which are designed to prolong life. Thankfully, although a forecasted death on a ward will be traumatic, staff are trained to offer emotional support to the patient, family and friends alike. Because death can be postponed, questions about prolonging treatment becomes a central issue for all those involved, occasionally resulting in family conflict about when to deny further treatment or when to shut down life support systems. In the process, the task of preparing for death and caring well for those that are dying can be neglected and opportunities for spiritual growth and the completion of important relationships can be missed. Whilst accident and emergency provides its own unique concept of dying, many similarities can be identified with death upon a ward. Technological responses to illness, disease and trauma can leave little time or thought for talking to patients and family, listening to their concerns or for caring for them as people and not simply as a medical condition. The environment of a hospital is inimitable, it provides us with an array of technological apparatus not experienced on a daily basis. The clinicality of these surroundings, coupled with unknown procedures and medical jargon, is enough to strike fear into any individual, worse still if you are fighting for your life. Images of road traffic victims and trauma cases, highlighted by documentaries and television dramas are in contraposition to the supposed tranquillity of dying at home, the severity of death in an emergency room is hugely public and without much dignity, offering virtually no privacy or intimacy for final good-byes. The department is all too often the setting for sudden and unexpected deaths – myocardial infarction, trauma cases and chronic respiratory disease all contributing to the death toll and although the health care professionals, within this environment, deal with death on a daily basis as part of the norm, they are faced with many emotional and ethical dilemmas. Nurses will be required to make calls to relatives informing them that the death of a loved one could be imminent. The pressure on a family to reach a dying relative is immeasurable, far worse the feeling of guilt, if they are too late. The decision making process for staff to cease cardiopulmonary resuscitation is a medical activity that involves major ethical issues, especially as they will be unaware of the dying person’s wishes in most cases. In these instances the place of death is both traumatic not only on the survivors but also on the health care staff involved. The place of death, it seems, does indeed directly affect the experience of dying but in summary it appears the negative impact on those involved, other than the patient, far outweigh the positive factors. Logistically today, our place of death is far more likely to be determined by illness and circumstances rather than choice and far too often the patient will not be allowed the privilege of embracing death in an unequivocal way in a setting of their choice. In order for the choices about our preferred death bed setting to be made more flexible, we need to confront the notion that death is a taboo subject, be more readily able to discuss our requirements and for far more government funding to be available to support those wishes. References – Open University (2009), K260 Death and Dying, Block 1, The Social Context of Death and Dying. Beaumont.K, Unit 3 ‘Death by Numbers’ and Komaromy, C & Woodthorpe, K, Unit 4 ‘Death and medicine: postponement and promise’, Milton Keynes, The Open University.