Hospice care: Support for terminally ill and families

Hospice care is for those with a terminal illness and can be given at home or in a hospice.

The philosophy behind hospice care is to make death comfortable and peaceful, if it has got to the stage in a person’s illness where death is inevitable. It aims to improve the quality of life that a person has left.

A hospice facility is generally for people rapidly approaching death, but people may also stay for short term stays during their illness, such as for respite care to give a family member a break from caring. There are many purposes for which someone might stay in a hospice, such as they need specialist intervention for their symptoms, such as pain management or nasogastric tube feeding. They receive palliative care that is holistic, covering physical, mental and practical needs.

Referral to hospice care

To benefit from expert support at end of life by a hospice team, a person will need to be referred by a healthcare professional, according to Sarah Gigg, director of nursing at Sue Ryder, a palliative care and bereavement support charity.

She says: “There is a common misconception that accepting hospice care means someone will die imminently however it is very common that people referred to a hospice will have many months to live.  The ethos of hospice care is so we are supported to live as well as possible for the days we have left. 

“Some patients may have a short stay in the hospice if they are struggling with symptoms due to their condition. For others, visits to a day therapy hospice may mean they can be supported to stay in their homes with their families, if their condition is stable. 

“A person reaches the final weeks or days of their life, and they may be cared for in a hospice inpatient unit or at home with specialist palliative care support.”

Admission to a hospice

If you feel that a hospice is the best place for you or your loved one, talk to a doctor, palliative nurse or hospice staff member about the situation. They can give an informed medical opinion and organise a place.

Ms Gigg says: “Either the patient’s GP, hospital consultant or a clinical specialist nurse can refer them to a hospice. They will discuss with their patient in detail regarding this and with their agreement contact the hospice to discuss the next steps.”

Staying in a hospice

 “Each hospice is different, but many hospices offer patients their own rooms. A common misconception is that hospices are sad places.  However, many hospices are bright and happy places to be with family and friends whilst being supported by expert palliative care staff,” adds Ms Gigg.

Hospices often support people to do a whole range of activities such as crafts, art and exercise.

Anita Hayes is head of learning and workforce at Hospice UK. She explains: “People can take part in all sorts of different activities, such as crafts, art, exercise. Many hospices do have equipped gyms and many have gardens where people can relax with their families and friends. Some hospices also run gardening clubs. There’s a whole range of activities that people are involved in that are very much aimed towards supporting people to live well with a life-limiting condition.

“It’s importantly about meeting people’s individual needs and it’s about not seeing somebody as limited by their illness but finding what they can and would like to do and then seeing how we can best support. Activities are not always within the hospice building, there are also links with community spaces; it’s about partnership working and having care across the community.”

Outpatient hospice care

Palliative care is available in hospitals as well as care homes. Most hospitals will have specialist palliative care doctors and nurses. They can help with issues such as symptom control and pain management.  People living in a care home may receive care from specialist palliative care teams based in a hospital or in a hospice.

 “The majority of hospice care is provided outside the hospice building, supporting people at home”, according to Ms Hayes. She says: “Many hospices work closely with care homes, very often by providing education and training to care home staff.

“That’s also very much a two-way learning process. Hospice staff will learn from care home staff. That’s important in terms of appreciating that there’s different expertise that they can teach each other, including bespoke training and hands-on support. Hospice staff are sometimes going into a care home and working alongside care home staff. They’re working in partnership to share palliative care expertise.”

Medical care in a hospice

Hospice nurses are trained to deliver end of life care. They can give specialist care such as administering medication, changing dressings, cleaning wounds and looking after treatments such as tracheostomies.

Ms Gigg of the charity Sue Ryder, explains: “Hospice units are staffed by speciality trained nurses day and night, seven days a week. The Community-based hospice teams vary in the hours they support people in the home.  Some services offer expert advice. Other services also offer multiple visits a day for personal care combined with emotional support and night sitting.”

All palliative care nurses are expertly trained to support people and their loved ones when someone is nearing end of life or dying. The range of care and support can include:

• Assessment of symptoms and how someone responds to treatment
• Personal care to preserve dignity
• Sensitive and skilled conversations to determine the person’s wishes on end of life care
• Conversations about a person’s worries and fears surrounding death and dying to ensure the right support provided.

Nurses work as part of a team of specialist palliative care experts. These include doctors, nursing assistants, physiotherapists, occupational therapists, social workers and bereavement support workers. This multidisciplinary team combine expertise to meet each individual patient’s unique needs.

Other care at a hospice

Many hospices offer a range of complementary therapies including massage, aromatherapy and reiki to reduce stress, increase energy and improve relaxation and sleep.

They can also offer to help with the big questions playing on someone’s mind, or if a person is feeling fear and anxiety.

Hospices also offer social and wellbeing sessions including arts and crafts which allows people in similar circumstances to get together. 

In addition, they offer rehabilitation to maintain or build strength, relearn skills or find new ways of doing things depending on goals and interests, so people can live their lives as fully as possible.

Support for your family

Many hospices offer bereavement support for patients and families, which can be provided before and after a bereavement.  “A range of professionals can provide bereavement support depending on the need including chaplaincy and spiritual leads, psychotherapists and counsellors. Support can also be provided by volunteers, through the coordination of support groups,” reveals Ms Giggs.

Supporting people after someone’s died is very variable in terms of people’s individual needs and also the kind of support that’s available, according to Hospice UK. Ms Hayes says: “For example, in one hospice there is currently a garden scheme supporting men who’ve been bereaved, which is an ongoing initiative. A number of hospices have this kind of group and peer support available, which is ongoing depending on what that person needs. Many provide more of a drop in whereby you contact them if you would like support, but equally there are group projects happening for group support.

“Hospice UK leads a campaign called ‘Dying Matters’ which is aimed at encouraging the public to talk more about death and dying and more practically about resources and preparing but equally about dispelling the myths, critically that question about hospices. Hospices are very much about living life well and having a good quality of life with illness. There are many projects that hospices have that are about supporting people to live well in the community and at home, for example how to manage their symptoms. Hospices are very much about being part of the community that they’re serving and promoting wellbeing and living well and caring for people towards the end of life and who are dying.”

Case study

Alice Tringham* shares her experience of hospice care. Her father was rushed from a hospital to a Sue Ryder hospice, in 2019, for the last day of his life.

She said: “They’re lovely, they’re the most comforting place. You almost feel quite at home, they’re so lovely and welcoming. The gardens were beautiful, so as a relative or a patient you can go outside, there are even rooms that you can wheel the bed to that have giant conservatory windows so you can look outside even if you can’t go outside. People are scared of hospices, but it’s the least scary place.

“In the process of time when the person’s under hospice care at home, they’re there for emotional support and the process about end of life too. My dad didn’t want to know, he was alright, but I needed to know and the nurse talked me through it privately. They’re so gentle but they don’t sugarcoat it. She explained what they do to keep him comfortable. Any concerns you’ve got, they’ll talk you through it.

Hospice support for family

“The level of support when your loved one’s dying is exactly what you need; the level of compassion from the nurses and there’s often volunteers. For example, my mum was planning to stay over that night, they have a guest bed in the room. They even gave her wine in his last hours. They do very good assessments, the doctors knew exactly what and how much to give him. We didn’t know if he was in pain because he couldn’t tell us. They did and made sure he was as comfortable as possible. 

Ms Tringham explained: “When the person is dying, they’ll give you a leaflet of what to expect. This is because obviously things happen physically. The person may stop speaking, refuse food and drink. Bad smells can come out of their mouths, they sometimes try to take their clothes off. You may hear your loved one talking to a deceased pet or relative in the room. It’s in the booklet, that’s how commonly it happens.

“When he was actually in his last few hours, they put this thing in that smells nice, like a steamer thing that was calming and covered the smells that the body can expel when dying. 

“They’re taking care of the family as well as the patient. They’re popping in and out, giving the space you need but they’re there if you need them.

“I still remember the nurse went off shift in the evening but she came in and said goodbye. She knew he would be gone by her next shift but she said it was lovely to meet him. They were just amazing. I remember literally thinking of the nurses like angels. 

Support until the end

“There was a moment I was there with him and he switched, I knew something had changed, he was agitated. The nurse looked at him and said, “I’m really sorry, I think it’s going to be tonight”. The nurse was telling me I was doing so well and being so brave. That reassurance was really comforting in those very scary times.

“When he was literally dying, we got a nurse who confirmed that these were his last breaths. We needed to leave, we could have stayed but we wanted to go. They got us tea and got him ready, tidied him up, made the room all nice for if we wanted to go back in. There’s cultural things for some people, you can spend as long as you want with them afterwards. I did go back in, not for long because he didn’t look as much like him afterwards. They’d put a rose in his hand.

“The aftercare is really good, they help you post-death as well. You can have counselling and they help you with the next steps.”