People's experiences of end of life care in West Yorkshire

NHS West Yorkshire Integrated Care Board approached Healthwatch in West Yorkshire after committing to developing an end of life care vision to ensure residents of West Yorkshire receive the support they need and can die in a place of their choice, with consideration given to what and who matters to them.  They particularly wanted to hear from a variety of seldom heard groups about the six ambitions they had developed in relation to end of life care.  They spoke to 143 people.

Ambition One: Each person is seen as an individual 

When services don’t feel personalised enough, individuals and their families will often seek out information independently. People facing health inequalities may be at a disadvantage in this regard, in that they may have fewer means to access information independently, may face language barriers and so on. 

Good, personalised conversations reflect the fact that people may not be able to take in all the information they need to straight away. Everyone needs to have more than one opportunity to have meaningful conversations with professionals, so that they can absorb information at their own pace. Good, personalised conversations are gentle and empathetic, but they give the person a very clear idea of what is happening and what to expect. Professionals should always avoid misleading language or hints. 

When a dying person isn’t able to communicate directly with services (due to a language barrier, sensory impairments or conditions such as dementia, for example), this often means information has to be shared via carers and family. This can have implications for carers’ wellbeing and the patient’s right to make their own decisions. 

For services to feel personalised, they must be quick and responsive: those fundamentals need to be consistently in place. This should be the case wherever a person lives and whatever source of care they choose. 

Not everyone knew when end of life care had begun, suggesting that individualised conversations hadn’t been as effective as they might be. 

Sometimes relatives and friends would benefit from more individualised attention when their loved one is actively dying. They don’t always know what the process of dying can entail, so being told even slightly in advance could make their experience a little less shocking

Ambition Two: Each person gets fair access to care 

People with children and wider caring responsibilities can find it difficult to juggle them with their responsibilities linked to end of life care. 

People see timeliness and early intervention as key to ensuring everyone gets fair access to care. When services only intervene later in a person’s journey, they can feel less tailored to the individual’s needs, especially if their condition has progressed to the point where they can’t get the most out of them. 

Some people said that they appreciated services’ openness to having lots of family around the dying person, which can be an important part of their culture or religious beliefs. Generally speaking, the people who told us about how services accommodated their faith were broadly satisfied. People don’t necessarily expect services to participate in or actively facilitate faith-based practices (with a few exceptions, such as the expedited burials which several respondents told us had been provided). Instead, they simply want services not to get in the way of what families need to do – and, very largely, people report that services did just that. 

While decisions around issues such as resuscitation certainly can be influenced by religion,  people’s beliefs can be extremely individualised, and assumptions shouldn't be based on a person's belonging to a particular faith. 

Occasionally, older people felt their dying relative was written off by services on account of their advanced age, with less being done to help them once they were on an end of life pathway. 

People who live on the border of different places can be at a disadvantage, in that services must coordinate across systems so that people do not have to travel further and to different locations. 

Some of the responses from people who care (or cared) for a dying loved one at home suggested they faced particular challenges. Sometimes family carers were providing highly intensive and intimate support, and they felt that they (and their loved one) could have benefitted from more information and support. They didn’t always feel well prepared or briefed about the realities of caring for a dying person. 

Ambition Three: Maximising comfort and wellbeing 

People want to be comfortable enough to use the time they have left to do as much as they can with their families and loved ones. This is another reason why it is important services come into play as soon as the person is on an end of life pathway – people can’t get as much out of them if they arrive later, when their condition has already deteriorated. 

Some families have found themselves playing a primary role in keeping dying loved ones comfortable. They don’t always feel well-informed about how best to do this and could benefit from more guidance and support at the start of the end of life pathway and as the patient’s condition progresses. For services to keep people comfortable, they need to be responsive and fast, including out of hours and during bank holidays.

Pain relief is an important part of this, but so is the provision of home equipment, the right bed and care that keeps people safe such as turning. 

The question of eating came up a few times. Sometimes families could be very disturbed when a dying loved one isn’t eating. Where this is the case, it’s very important they have the chance to speak with expert staff about this so that solutions can be put in place where they can be, and people are reassured that the dying person is as comfortable as possible. 

A few people felt hospital or care home environments hadn’t been calm or peaceful, making patients’ last moments less comfortable than they could have been. 

It was sometimes felt that pain medication had to be actively chased up, with the responsibility falling on the patient or family to organise it when needed. 

Ambition Four: Care is coordinated 

Families can find themselves stepping in to play a key coordinating role. 

Those people who spoke about 24/7 services suggested they were helpful and reassuring. 

Levels of coordination can vary greatly depending on which services are involved. There are many different end of life care providers across the region, and people’s experiences suggest that some may work together more effectively than others. 

Having to chase up services can be a source of distress, in addition to the emotional pressures people and families naturally face when given a terminal diagnosis. People rarely said they have a single contact they can turn to for help about how services connect up. 

It is well documented that GP services are under great pressure. This can affect their ability to support and play a coordinating role for people who choose to die at home. 

Ambition Five: All staff are prepared to care 

Staff have the power to make a great difference to people’s experience of end of life care – and in many cases they do exactly that. There are staff members across our region who see the person as well as the patient and provide extensive practical and emotional support to them at the end of their lives. They should be commended for the outstanding care they give. 

People appreciate being spoken to by staff as adults capable of making their own decisions, rather than being seen only through the perspective of their illness. 

The expert care offered by experienced end of life care specialists is highly valued. People and families feel reassured when staff can use their experience to guide them and let them know what to expect, especially as the dying patient is approaching the very end of their life. 

Sometimes people have encountered problems with staffing levels and the type of professionals assigned to particular roles. Some have felt that bank or agency staff were less prepared to do the highly skilled and specific role of looking after someone at the end of their life. Others have observed that staff don’t have enough time to devote to individual patients.

Ambition Six: Each community is prepared to help 

Few people told us they had been offered counselling, with the exception of those whose family members had died in a hospice or parents who had lost children. Many of the bereaved people who took part in this project said they were talking to someone about their experience for the very first time. 

Most people saw family and friends as the first contacts they would turn to for support through dying and bereavement, with very few saying they saw this as the responsibility of a wider community. However, not everyone received the support through caring for a dying loved one and bereavement that they would have wanted from family and friends. Sometimes, people felt that others weren’t equipped to have conversations about death with them: their families and friends didn’t know what to say and tended to avoid the subject. 

When people don’t feel supported through dying and bereavement, another factor can be the impact that caring for a dying loved one can have on families. Caring for a dying person can be an all-consuming endeavour. It can cause resentments within families when some members feel that others aren’t contributing as much. 

Sometimes, people’s grief is made more painful when they feel their loved one didn’t die a peaceful death, or they felt they had been let down by services. When families supporting someone through dying don’t feel services are working as well as they should, they don’t necessarily feel that they have the time or the strength to complain to services at the time, or potentially for some time afterwards.