End of life care is something that many care workers have to face, whether they expect to or not. For example, at the service I currently oversee, despite being a reablement service, we do get adults that come into our service through the wrong pathway or due to lack of capacity, and we must all be equipped to handle this.
Discussing death is never easy. It often makes us reluctant, but it is really important that you embrace it so that you know how the people you support want to be cared for in the final months of their lives, as well as any treatments or bucket list wishes they have.
To be part of that person’s life, and to ensure that their end of life plans are fulfilled, is a real privilege. However, there are also challenges of this for the people who are receiving support, their families, and the care organisations.
In this week’s blog post, I will explore some of the challenges of end of life care and what we can do as care professionals to improve our services.
Does palliative care mean end of life care?
Palliative and end of life care are terms that are often used interchangeably when discussing this type of care, however, they're not the same.
End of life care is the care that is offered to support someone who is near the end of their life. The aim of this care is to ensure people are comfortable and that practical things such as wills and wishes are sorted.
Palliative care is much broader, usually lasts for longer and is offered after a diagnosis of a terminal illness. This type of care ensures that you and the people around you receive the support required, such as emotional support to manage wellbeing. Having palliative care doesn't necessarily mean that you're likely to die soon – some people have palliative care for years.
Palliative care vs end of life care
I put on my secret shopper hat and phoned four care services in my local area, and all of them spoke to me about end of life care. However, when searching online for ‘palliative care’, there were limited results showing organisations in my area.
From this research alone, it shows that companies providing palliative care have the power to change the narrative. Some suggestions for how to do this might be to:
- Update your website to include a dedicated palliative care section, alongside the end of life section to ensure people can find your service on Google.
- Review your leaflets and brochures, making sure to include all the services you offer
- Use services such as Macmillan Care, to come to team or relative meetings to educate your staff and residents’ relatives on the differences and what they can expect
- Share testimonials, as they can help to demonstrate the differences by using human experience examples
The challenges in end of life care (and solutions to overcome them)
Ageing population vs recruitment and retention
We know we have an ageing population as well as a recruitment and retention crisis in health and social care. Due to this, I have seen a growing demand for end of life services, with people being put into inappropriate settings, not having their end of life wishes met, and an undignified and unhappy end to their life.
Unfortunately, this situation is only going to get worse, especially with science and research developments. People’s health is prolonged, but with this comes complexities, such as living with more than one illness. But what can we do within our organisations? Some steps could include:
- Diversifying your business to become the ‘go to’ organisation for palliative or end of life care
- Implementing a new role within your organisation, such as end of life lead - this would be great for career development and upskilling your workforce
- Partnering with a local end of life service or allocate one bed in your service for end of life care
Other things you might consider:
- If you are a care home, could you start a small homecare business on the side, specialising in end of life care?
- Do all the people you support have end of life or advanced care plans?
- Do you ensure that your local care association is doing all they can to put pressure on the local authority or Integrated Care Board to develop long term planning for this? Are you part of the integrated care system and can raise this for your region?
Think outside of the box but know there is a gap in the market for this support.
You hear it all the time, but sadly end of life care and palliative care are both postcode lotteries, where services and the quality differ in different regions.
Some local authorities have long term planning which means they have allocated resources and funding, but others have budget constraints and are struggling with the here and now and cannot think about the future.
We sadly see cases in the media of people who have been left on long referral lists, never receiving the support they need and this is heartbreaking. But as care professionals, what can we do?
Upskill your staff teams. You may not be experts and you may not provide end of life or palliative care, but if families are desperate for support, you may be a better option than none at all. I know when I managed a home care service, we supported many people but we were honest about our training and that it wasn’t something we specialised in. However, we learnt with every person we supported, we collated feedback and learnt from it, and as a service, we grew to become one of the most referred end of life services in the area, with a partnership with a local hospice.
It is also important to encourage the people you support to make end of life/advanced care plans so you can ensure you and your teams are aware of their wishes and can act in a timely manner to meet them.
Poor collaborative approaches
As much as we wish for a joined-up Health and Social Care system, this isn’t the case across the country but some areas have improved since the formation of Integrated Care Systems. Ensuring clear pathways for referrals are known, allows those receiving care and support to be transferred seamlessly.
Collaboration in social care isn’t just about systems and services, but also about families and the people important to the person. Making sure there is effective communication between everyone, providing emotional support and being able to signpost to effective services can make all the difference.
Families and close friends
It is also important to consider the friends and family of the person you are supporting. Emotional support is often needed and again, this is where upskilling your team can help. In my experience, the family need more support than the person receiving the care but with the right approach, you can support them to be empowered and emotionally able to come to terms with things.
Here are some practical things you can do to help:
- Encourage them to speak to their GP about how they are feeling, especially if it’s impacting their physical or mental health.
- Ensure they contact their local adult social services to ensure they get a break, especially if they are an unpaid carer.
- Refer to bereavement services.
- Be available to talk or just listen.
- Ensure effective communication, in a variety of formats so that people feel involved and not left out of the loop.
- Signpost to support groups, and if there isn’t one in your local area, is this something you could start, either yourself or in collaboration with a local hospice or service?
Making ethical decisions
As we have more control over our lives, and we continue to break down stigmas, we live in a more informed society. With this comes choices that others may not agree with, such as Do Not Resuscitate orders (DNRs), decisions based on cultural beliefs, and assisted suicide. As a care provider, it’s hard to navigate all of this, but if you encourage effective communication processes and collaboration, we can help to reduce some of the tensions.
Unfortunately, there are some things that are outside of our control. For example, the balance of giving someone enough pain medication with the level of pain they are experiencing. Again, with effective communication and collaboration we can ensure relatives and others are aware of what is happening, but also then reassure the person being supported.
We must remember that we are supporting people and their decisions. As long as an individual has the capacity to make plans for how they want to be supported, this is what we have to do.
It is never easy to manage family expectations. Upskilling your staff in conflict or complaint management is beneficial, so that they know how to handle themselves when in that scenario.
This has been one of the longer blog posts I have written, but I hope that I have addressed some of the challenges that many of us care providers face, with some practical advice on what you can do to improve your processes.
Implementing these tips can help you adapt and grow your service to meet future demand, and remain viable within the social care market.