Lack of hospice understanding prevents people from choosing care they want, finds Sue Ryder report.
The charity is calling for action to dispel hospice myths and stereotypes so people can make informed choices about end of life care that is right for them.
Despite 60% of people who receive care at Sue Ryder hospices returning home, many people remain unaware that hospices are not just places to die but offer a wide range of treatment and support to help people manage the symptoms of complex or long term conditions.
Sue Ryder’s report ‘A time and a place’, commissioned from think-tank Demos, revealed many are misinformed about their end of life choices, with stereotypes around hospices in particular acting as a barrier to fulfilling people’s needs.
The polling findings highlight that misperceptions about hospices are barriers to people being able to make informed choices about the end of life care setting that is best for them.
63% of people believed that dying in a hospice meant ‘dying alone and not surrounded by loved ones’, 61% of people believed that being in a hospice meant dying ‘without any privacy or dignity’ and 90% of people believed that religious, cultural or spiritual needs would not be met in a hospice. Meanwhile, 81% of people believed that they wouldn’t have access to professionals for last minute concerns.
In contrast, Sue Ryder hospices:
- Provide medical expertise from hospice nurses and doctors to manage symptoms and pain, as well as offering emotional and psychological support.
- Have no visitor restrictions, enabling loved ones, family and friends or pets to visit at any time of the day or night, and stay for as long as they want.
- Have quiet spaces that can be used for reflection, prayer or worship, as well as visiting chaplains that can offer dedicated spiritual support.
- Provide support and counselling to patients, loved ones and family members, with nurses available around the clock to talk to or provide a listening ear.
The research also found that people surveyed who had direct experience of a friend or loved one being in a hospice had more positive perceptions of hospices, such as having symptoms managed and being pain free, being surrounded by loved ones and having privacy and dignity. And, that those people polled with direct experience of hospices were more likely to choose to die in a hospice themselves.
These findings have spurred Sue Ryder to call upon the end of life care sector, particularly hospices around the country, to do more to improve the understanding of their role in care and wider society.
Paul Woodward, Chief Executive at Sue Ryder said:
“We know that people need to be better equipped to make the right decisions about the care they want towards the end of their lives, with a lack of understanding of hospice care being particularly striking. To improve understanding of the care that people can access in and from hospices, we want more hospices to open their doors to their local communities and act to improve knowledge of what hospice care is really like.”
Paul added, “We face a ‘ticking time bomb’ in regards to the growing demand for end of life care in the UK. Britain’s rapidly ageing population and increases in the number of people with multiple long-term conditions will mean that by 2030, the number of deaths each year will outnumber the number of births, rising by 17% to 590,000. It has never been more urgent to get end of life care for people, and their families, right.”
To address the public’s misperceptions of hospice care, Head of Care at Sue Ryder’s hospice near Bedford, Dominic Carter, has put together his top 6 myth-busting facts:
1. Hospices are much more than places where people go to die. They offer a wide range of services so that people can have choice and control over where and how they receive their care. Services such as in-patient facilities, day services, therapeutic recreational activities, respite care, outpatient clinics that help relieve painful symptoms and care in people’s homes.
2. Not everyone who is referred to a hospice dies in a hospice. Around 60% of people who are referred to Sue Ryder hospices go home after receiving care to manage pain and other symptoms resulting from their illness.
3. Hospices are more than tea and sympathy. Hospice nurses and doctors are extraordinarily well-equipped to support people, and their families, at this most emotionally challenging time. The care provided is not just about managing physical symptoms. It’s also about providing emotional, psychological and spiritual support.
4. Hospices are not dark and depressing places. Hospice teams work together to create a friendly, welcoming and warm environment in which people, and their families, are supported and able to relax in. There is often laughter as well as tears. And, it can be a really special time when family members are able to stop being their loved one’s carer and can be their husband, wife, mother or son again.
5. You never have to be, or feel, alone in a hospice. There are no visitor restrictions; family and friends and beloved pets can visit at any time of the day or night, and stay for as long as they want. And, nurses are on-hand 24-7 to talk to or provide a listening ear.
6. Hospices are available for everyone. Hospice care is not just for people with cancer; all those diagnosed with a terminal and life-limiting condition could benefit from hospice care. And, our hospices cater for all religious, non-religious and spiritual beliefs. We also actively engage with black and minority ethnicity communities to break down cultural and societal barriers to accessing hospice care.