Hospice Care: It's About Living, Not Just Dying. When you hear the words hospice care, what comes into your mind?For many people, the answer is understandably difficult. Hospice can be associated with the final days of life, with giving up on treatment, or with a place you only go when there is nothing more that can be done.
But those are some of the misconceptions that healthcare professionals and hospices are working hard to change.
As you heard, on this week's Word On Health, (which you can hear again via the audio player at the bottom of this page, with an extended interview on our podcast) we're talking to Mandy Malcolmson, a highly experienced palliative care nurse from Strathcarron Hospice about what hospice care really means—and about an important new service that could they have pioneered in Scotland to make it easier for some patients to access support at an earlier stage.Hospice care isn't about giving up.
Perhaps the biggest misconception is that being referred to a hospice means that treatment has stopped or that someone is necessarily in their final days.
It doesn't.
Palliative care is about helping people with serious or life-limiting illnesses to live as well as possible. That can include managing pain and other symptoms, providing emotional and psychological support, helping families and carers, and assisting people to make plans about their future care.
It can be provided alongside other treatment.
And it isn't only for people with cancer.People living with conditions such as heart failure, lung disease, neurological conditions, dementia and other life-limiting illnesses may also benefit from specialist palliative care.
Are people being referred too late? There is evidence that, in many cases, people are reaching specialist palliative and hospice services later than would be ideal.
A major UK study funded by the National Institute for Health and Care Research looked at more than 42,000 patients across 64 hospices. It found that the median time between referral to hospice and death was just 48 days.
The research also found significant differences between groups of patients. Older people and those with non-cancer conditions were, on average, referred later than people with cancer.
That matters because hospice and specialist palliative care isn't simply about what happens in the last few days of someone's life.
Earlier involvement can provide an opportunity to get symptoms under better control, understand what support is available, help families and carers, and give patients greater choice about their care.
NICE's evidence review on the timing of referral to palliative care has also found evidence linking earlier involvement with outcomes including fewer emergency hospital admissions and a greater likelihood of people being able to die in their preferred place of care.
Why do people wait? There isn't one simple answer.
None of these reactions is unusual. But delaying a conversation doesn't necessarily make the underlying need disappear. It can simply mean that patients and families have less time to benefit from the support available to them.
Research involving bereaved relatives has also found that some families believe their loved one was referred to hospice care too late, with those families reporting greater unmet needs and lower satisfaction with aspects of end-of-life care.
A different way of accessing hospice support. One of the particularly interesting developments at Strathcarron Hospice is its introduction of a service allowing eligible patients to self-refer for support, rather than always having to wait for a healthcare professional to make the referral.
This is significant because it puts another door into the system.
Instead of thinking, “Someone will tell me when it's time for hospice care,” patients can find out whether the service could help them and, where they meet the relevant criteria, make contact themselves.
Of course, self-referral doesn't mean that everyone will automatically be accepted for hospice services. There are eligibility criteria and the hospice team will assess what support is appropriate.
But the principle is important:
Perhaps the most important message from our conversation is that palliative care isn't about taking hope away. It can actually be about giving people more control.
It's about asking:
Those conversations can be valuable long before the final days of someone's life.
Find out more. If you or someone you care about is living with a serious or life-limiting illness and you think hospice or specialist palliative care might help, speak to your GP, consultant, community nurse or another healthcare professional involved in the person's care.
You can also find out more about Strathcarron Hospice, its services and its self-referral arrangements through the hospice's website.
And remember: asking about hospice care doesn't mean you've given up. It means you're asking what support is available to help you or someone you love live as well as possible.
The information in this article is intended to provide general information and should not replace advice from your own healthcare team. Eligibility and arrangements for self-referral to Strathcarron Hospice are subject to the hospice's current criteria and assessment.
Listen to this weeks radio report
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