End of life care: nurses offer much-needed continuity amid often fragmented services

Nurses can take the lead in timely planning and multi-agency collaboration, says Marie Curie

Nurses can take the lead in timely planning and multi-agency collaboration, says Marie Curie

Picture: iStock

Caring for someone and their family during their final weeks and days of life is both a privilege and a challenge.

We know there is only one chance of getting things right for everyone involved. The things that matter are central to the person’s experience – privacy, dignity, compassion, empathy, listening to what the person wants, being alongside when the person is in physical or emotional distress. Being aware of their spiritual and emotional needs as well as their physical requirements. This is person-centred care at its best.

We live in a society where we don’t readily talk about death and dying. Generally, people are frightened about talking about it, and as a result, family members are not well prepared and clear about what is important – ‘what matters’ to the person who is dying. This can create stress and anxiety for everyone involved, and often there is less time to plan.

Awareness of what matters to the person who is dying is essential, but many people find discussion
of death frightening. Picture: iStock

Coordination is essential to meet the person’s needs

People die at home, in a care home, hospice or hospital. Whatever the care setting, it is important the person’s needs are understood, well-coordinated and communicated among the multidisciplinary and multi-agency team. Nurses and care staff provide the thread of continuity for the person and their family.

We should celebrate the fantastic work nurses, allied health professionals and care staff do and what they achieve in an imperfect health and social care system where there can be lack of continuity and poor communication. Sadly, professionals may become involved too late in a person’s care to really get to know them. Against this backdrop, nurses become experts in ascertaining what is important, and problem-solving on behalf of the individual.

‘There is also an ‘emotional burden’ for nurses and care staff especially if things do not go as well as planned’

Earlier this year, a family member of mine, Hazel, was dying from lung cancer. She had a late diagnosis and had chosen palliative care rather than chemotherapy. She wanted to die at home, which we were able to arrange. Hazel was grateful for the care she received from her hospital team, GP, community nursing team, hospice palliative care nurse, and from the care agency that provided carers from three times a day to full, live-in care in the later stages of her life. She died peacefully at home four months after her diagnosis.

I saw a system and staff under pressure

My experience of supporting Hazel and the family was less positive. What I saw was a system and staff under pressure; communication was poor and there were many delays in getting oxygen, medications and equipment in place at home. The care staff were compassionate and caring, but felt completely out of the loop in relation to coordinating and understanding the plan of care from the GP, community nursing team and the hospice palliative care team. The family played the role of care coordinator and were persistent in getting things to happen.

Lack of care coordination can add to the emotional burden on nurses.
Picture: Neil O'Connor

Not all families are able to advocate in this way and nurses are aware the distress caused by a poor experience at the end of life can affect the way family members grieve. There is also an ‘emotional burden’ for nurses and care staff, especially if things do not go as well as planned.

Ensuring care is the best it can be

The earlier we can start conversations about anticipatory care and understand what is important to the person and their family, the better. We need to think about how we can equip ourselves and our teams.

The Royal College of GPs and Marie Curie have recently published the Daffodil Standards, to support GPs and community teams to work at improving end of life care for patients.

‘Those of us leading and delivering care need to influence how money promised in the NHS Long Term Plan is spent’

Developing our nursing leaders at the front line of care and investing in quality is essential to enable nurses to work collaboratively with others in the health, social care, voluntary and charity sectors.

We should also be more open to looking at ways of supporting each other to care for people well. The emotional burden of care should not be underestimated and requires active support from employers in supporting the health and well-being of staff.

The support of colleagues is important. Picture: iStock

Marie Curie confidential support line 

0800 090 2309

We need to care for ourselves too

As practitioners and care givers, we should seek ways of maintaining our own health and well-being and engaging in clinical supervision, debriefing from particularly challenging situations, and seeking early support if we feel overwhelmed by the work we do.

The NHS Long Term Plan has pledged to spend an additional £4.5 billion on community services to support the integration of out-of-hospital care. Those of us leading and delivering care need to influence how that money is spent so more can be achieved for patients and their families through collaborative working. My hope is that nursing is ready to exercise its professional expertise in making this happen.

Julie Pearce, executive director of nursing and allied health professionals, Marie Curie

Further reading

Investing in Quality, The King's Fund

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