What you need to know about end of life care
What is palliative care? Who provides it, what is involved and how is it accessed? We look at the care services that enable terminally ill people to live with comfort and dignity in the last weeks and months of life.
Knowing how best to manage a loved one's end of life care is a sensitive issue at a time when the smallest of decisions can feel overwhelming. Palliative care teams offer support and advice during this process to people (and their families) who are living with an incurable illness, when they are dying, and in bereavement.
Palliative care is often used as an umbrella term, with 'end of life' considered to be the last year of life. It involves thinking about what matters to each person (individual, holistic care), assessing and managing physical symptoms (eg, pain, breathlessness, sickness) as well as providing spiritual support (meaning and connection with others), social concerns (who you are and what you do) and emotional and psychological issues (your feelings and how you manage them).
Jennie and Gib
Gib was an inpatient at St Ann's Hospice in Heald Green, Cheshire in 2015, following a two-year battle with cancer.
"My gorgeous man, Gib, was 41 when he passed away after bravely fighting cancer for as long as he could," says partner Jennie. "We both had preconceived ideas about hospice care and at first Gib was really reluctant to go. After all, people die there and I thought it would be awful. When I went to look around though, the staff were amazing, and the family rooms were lovely. I came home and told Gib there was nothing to worry about."
Jennie has two daughters, Phoebe and Lila, who were aged six and two at the time. "I couldn't have looked after Gib the way the hospice team did in those last few weeks," she continues. "Having Gib at home while he was dying and trying to make life as normal as possible for the girls would've been so difficult."
"Gib's end of life could've been such a different experience, but the hospice enabled them to hang on to more positive memories of him. The nurses got his sense of humour very quickly and had a bit of banter with him when he could talk. They were always respectful but never gloomy about things," she adds.
Palliative care is provided by health and social teams in hospitals, care homes, and hospices, and in the community and people's homes. The type of care is based on individual needs, which may change over time.
Carole Walford, chief clinical officer at Hospice UK, explains: "People often think that hospices or specialist palliative care teams are the only services, but palliative and end of life care is about an approach to care, as well as a particular service itself."
Referral involves local criteria and guidelines, but is usually based upon where a person lives, who their GP is and what their palliative care needs are.
"For example, someone may see a palliative care nurse in the hospital and when they go home are seen by the general practitioner, community nurses and social services, as well as the hospice team," continues Walford.
Palliative care in the UK is provided free of charge by NHS palliative care teams (including several NHS hospices) and charitable hospices. These charitable organisations receive a proportion of their funding from the NHS, but are largely reliant on support from local communities, including donations and legacies.
"However, we know that financial concerns can be a worry," concedes Walford. "For example, the financial impact of being a carer, or off work because of feeling unwell. Sometimes people may need admission to a care home and therefore their financial status may be relevant as to what their contribution may be. So while support, care or admission to a hospice or palliative care unit is free of charge, one of the ways these teams can help is to advise on financial questions."
Advance care planning
There are a number of ways a person can document any decisions they have made about future care, or state who can speak on their behalf if they are incapacitated. The process helps ensure that they receive medical care which is consistent with their values, goals and preferences.
"This is called advance care planning," explains Walford. "And we know from what people tell us that being able to think, discuss, decide and document these choices and decisions in advance can be helpful."
Advance care planning (ACP) includes lasting power of attorney (LPA), advance decisions (previously known as advance directives) and advance statements. The Gold Standards Framework explains how to manage the process in five easy steps.
In some areas of the world, advance care planning is known as personalised care planning or anticipatory care, but ACP is the internationally recognised term used in more than 40 countries, and is in line with the UK Mental Capacity Act 2005.
The hospice sector supports more than 200,000 adults and children with terminal and life-limiting conditions in the UK each year. Hospices offer a wide range of services that extend beyond inpatient care, including in people's homes or in a daycare setting, such as breathlessness clinics, physiotherapy and occupational therapy. They also offer bereavement counselling, medical care for symptom control and support from social workers.
Hospice UK believes in an ethos of compassion and dignity for the individual in all palliative care settings.
"At the end of the day palliative care is about how we, as a society, can live well until we die," says Walford. "Initiatives like the Dying Matters campaign enable us as a society to do this by fostering more open conversations about death and dying and encouraging people to make plans for the end of life."
Jennie adds: "The palliative care team made everything as pain-free as possible for all of us, from the big decisions to the smallest of things that really made a difference. For anyone in a similar situation, it is an awful thing to have to go through, but there is so much amazing support out there that can help you through."