World Hospice and Palliative Care Day: Discussing the importance of Palliative & End of Life Care

Saturday 8th October 2022 marks World Hospice and Palliative Care Day, an annual unified day of action in support of hospice and palliative care. The day is about celebrating the importance of palliative care to quality of life, and advocating for equitable access for all.

The WHPCD theme for 2022 is Healing Hearts and Communities, recognizing that the experience of grief and the need to heal unites humans worldwide.

We are all connected through the universal experience of grief, yet dying and death are often uncomfortable topics many people are reluctant to talk about. Community support and everyday acts of compassion for adults and children living with serious illnesses at end-of-life are essential to improved quality of life. This includes families that need bereavement support.

There is often lack of awareness that a palliative care approach can include home based care – Cassie from our Complex Care home care team sat down to tell us more.

Some frequently asked questions about palliative care and end-of-life care

What is palliative care, and is palliative care different to end of life care?

There’s a big misconception that palliative care means end-of-life care (that someone is nearing death). Both children and adults can be under palliative care, and it can start years, months or weeks ahead of the end-of-life care process. Once started palliative care can sometimes be stopped.

Palliative care is about recognizing, treating, and responding to manage symptoms of people who are faced with life-limiting illnesses or diseases. It’s about being prompt with the care provided – that might include treating pain, people who have tiredness, shortness of breath or suffer from symptoms like constipation. Many people can live for many years with conditions that are painful, and managing those symptoms would come under palliative care.

Can palliative care happen at the same time as end of life care?

Palliative care can be of end-of-life care, but it doesn’t mean it’s the same thing as end-of-life care.

Who is involved in palliative care and end-of-life care?

It involves working with lots of different people – that could be GPs, social workers, nurses, care providers, physiotherapists, and occupational therapists – it’s about a coordinated plan of care where the main aim to prevent or treat symptoms. It also looks into the psychological and social aspects of care, taking into account the spiritual wishes of the individual receiving care.

Why is end-of-life care important?

It’s important that we treat death as we do life, and that it’s thought about and planned. You may hear it being talked about as Advanced Care Planning. It’s important to our clients because it gives them control and autonomy – it gives them a voice and it gives them a choice. They should be able to choose whether they receive palliative care or end-of-life care at home, in a hospice, in a hospital or in a care home. It’s also important for families as it gives them answers to some o the decisions that will need to be made further down the line – it takes some of the pressure and guilt away from them if there is something planned in place. It allows us to work together to ensure the outcome is as enriching and peaceful as possible.

Are there some conditions that would have to receive end-of-life care in an alternative setting to your own home?

End of life care can be delivered where you want it – it’s about your having a choice over the treatments you receive and where you want to receive them. We are able to provide services at home from agencies and care providers, nurse and GPs can also be involved – generally whatever can be provided in a hospital can be provided at home, including the administration of medicines.

How does end-of-life care at home help family, and how does family involvement help us deliver good end-of-life care at home?

Your family are those that know you best, and lots of families do want to be involved. By us being involved we can step in where needed, we can increase care where needed, or reduce it where needed – it;s about treating everyone as a whole, it’s the whole family dynamics. The care we provide isn’t always about the clinical side, it’s the support provided in the home – it could be putting the dishwasher on and getting the washing on – it’s about the support we can provide in the home to let family spend time with their loved ones.

What could palliative care at home include?

Palliative care can include complex care or sometimes simpler support – it can include:

Personal care such as assistance with toileting, bathing and getting dresses
Continence care – that might mean managing a stoma or catheter
Administering medication, or promoting to take medicines
Supporting with pain management
Help with getting in and out of bed, or moving around the home – this might include hosted transfers
Assistance with housekeeping such as vacuuming, changing beds or doing the laundry
Preparing meals, or even just making you a cup of tea, and washing up afterwards
Running errands to collect prescriptions or food shopping
Offering companionship and supporting your independence

What if more intensive care is needed? Can Alcedo Care provide live-in care at end of life or in palliative care?

As a provider we can provide short visits, someone coming in for an hour in the morning or evening, we can provide overnight care cover, we can provide 24-hour care up to a few weeks at a time, so there’s more time for the carer to get to know you..

What does good end-of-life care look like?

It looks like the individual wishes being respected, their autonomy maintained, their control, and the family being supported. It’s also about the right people being evolved at the right time.

What does the process of end-of-life care look like following palliative care?

When we look at end-of-life care there are normally 6 steps.

The first is to acknowledge it happening – to have open and honest communications.
The next step is for the care provider to get involved, asses needs and put together an agreed care plan. That will be done with a whole multidisciplinary team.
From there we coordinate care, ensuring staff have the right skills and personality for the individual they are providing care to.
From that we deliver a high quality of care in the home that respect the client and the families, making sure that we are there to support everyone.
When things are coming near to the end we examine if we need to reassess or change the plan
After death, the process isn’t over – there is support out there for families and carers – that may be pastoral support, counseling or signposting to bereavement support. We’re involved as much or as little as the family would like us to be.

Looking for palliative care at home? Or interested in how we can support with end of life care at home?

Our team would be happy to help. Simply fill in our home care enquiries form, or contact your local Alcedo Care branch.