Living with dying

Hospitals vary greatly, from large teaching hospitals to cottage hospitals, which may offer minor surgery or respite care.

People with terminal illness need good palliative care, which places special emphasis on pain and symptom control. Palliative care teams include many different specialists in pain control, nursing, social work, psychology and counselling and can be based in hospitals or in the community. Despite the development of such services, the medical, emotional and spiritual needs of people who need terminal care have sometimes been neglected.

To improve services the Leadership Alliance for the Care of Dying People has published ‘One Chance to Get it Right: how health and care organisations should care for people in the last days of their life’ June 2014*. It sets out the approach that should be taken in caring for all dying people in England, focusing on achieving five priorities for care.

• The possibility that a person may die within the coming days and hours is recognised and communicated clearly, decisions about care are made in accordance with the person’s needs and wishes, and these are reviewed and revised regularly.
• Sensitive communication takes place between staff and the person who is dying and those important to them.
• The dying person, and those identified as important to them, are involved in decisions about treatment and care.
• The people important to the dying person are listened to and their needs are respected.
• Care is tailored to the individual and delivered with compassion – with an individual care plan in place. This priority includes the fact that a person must be supported to eat and drink as long as they wish to do so, and their comfort and dignity prioritised

Many people we talked to recalled their experiences in hospital. Some talked about their treatment, such as chemotherapy or surgery (discussed more fully in the relevant sections of other Healthtalkonline collections on cancers and heart diseases, etc.), others spoke about palliative care or respite care.

We heard about many good experiences in hospital. For example, a woman who had breast cancer went into hospital for a week, partly to have a blood transfusion because she was anaemic, and partly to have her pain controlled. She thought she was lucky to have a single room, and said she quite enjoyed her time in hospital. A man who thought he might not survive his operation was struck by the kindness and humanity of the hospital porters who took him to the operating theatre.

Others were keen to praise the National Health Service, especially if they had been critical of it in the past. For example, a woman who had been treated for cancer with interferon said that she was grateful for all the expensive treatment she had received. A man who had had private care was so impressed at his happy and efficient NHS ward that he decided to stay there rather than return to the private hospital. Another man commented that he did not believe private care could have matched the specialist care he received.

Good nursing care is just as important as high-tech medical treatment, particularly towards the end of life. Many patients were reluctant to criticise staff, who were obviously overworked, but others had not formally complained in hospital because they did not want to be branded an 'awkward patient'. Staff shortages, or staff inexperience, were usual problems: a man with colon cancer said that staff “were run off their feet”, and that patients often had to wait too long for a simple thing like a bed pan.

Some patients had stayed in different hospitals or on several different wards and noticed how the culture varied. While some wards were described as happy, efficient, warm and friendly, others had inexperienced and uncommunicative doctors and nurses and poor standards of hygiene and care. This woman contracted MRSA in hospital and said that she rarely saw staff on her ward wash their hands.

In some hospitals the staff delivering food and drinks seemed to pay no attention to whether the patient could eat or drink unaided, simply collecting the trays of cold, untouched food. The daughter of a man with motor neurone disease said that staff were too busy to feed her father or the other patients in the ward who couldn't feed themselves. However, she remarked that for every 'dire' member of staff there was another who was 'wonderful'.

A man with prostate cancer, who originally came from India, experienced three different hospitals. Two had been 'very good', but in one hospital the nurses were too busy to attend to his needs, and he particularly missed his usual diet.

A woman with chronic obstructive lung disease sometimes spent short periods in her local cottage hospital for respite care. However, she found that staff didn't seem to understand her health problems and she didn't get much rest. She would have liked to have had a bed in a hospice, in her area, but there weren't any for people with lung disease (see 'Insufficient hospice care').

* The Leadership Alliance for the care of Dying People was made up of 21 national organisations it was formed so it could respond to the recommendations set out in More Care, Less Pathway (July 2013), the independent review of the Liverpool Care Pathway (LCP). The LCP was an approach to the care of dying people developed during the 1990s, based on practice in hospices. Its aim was to transfer best practice to other settings, including hospitals and social care. The LCP provided guidance on a range of different aspects of care, including: comfort measures; anticipatory prescribing of medicines; discontinuation of interventions that were no longer necessary or in a patient’s best interests; psychological and spiritual care; and care of the family. Following concerns about the use of the LCP, particularly from families, the Minister for Care and Support commissioned an independent review. The review panel found evidence of both good and poor care delivered through use of the LCP and concluded that in some cases, the LCP had come to be regarded as a generic protocol and used as a tick box exercise. The report made 44 recommendations. One of the key recommendations was that the LCP should be phased out. This recommendation was accepted by the Minister for care and Support. Use of the LCP was not mandatory and not all organisations that cared for dying people used it. However its use was widespread and there was considerable concern that it needed to be replaced by something else. 

Last reviewed July 2017.

Last updated July 2017.