Making every moment count
Death is an unavoidable part of life, and ensuring we live well until that time is something we all value. It’s essential to consider the needs and desires of people of all ages who are facing the realities of death, dying, and grief, along with their families, caregivers, and communities. Addressing their priorities and wishes can provide a more personalized care experience in the final months and years, leading to better outcomes for both the individual and the healthcare system.
The World Health Organization describes palliative care as a method that enhances the quality of life for patients, including both adults and children, as well as their families, who are dealing with the challenges of life-limiting, typically progressive, illnesses. This approach focuses on alleviating suffering by identifying and treating pain and other issues, whether they are physical, emotional, or spiritual.
In England, "end of life care" typically refers to the care provided during the last year of life.
Supporting the person’s wishes - planning their care
Care decisions should reflect what truly matters to your loved one, including their preferences for care settings and what should happen if they become unable to make decisions. If they wish, you can assist them in discussing these plans with their healthcare provider.
This process is often referred to as advance care planning. Documenting their wishes can help ensure they are understood and respected, and this is sometimes done through an advance statement. It’s important to remember that plans can change, and it’s okay if they do, as people’s preferences may evolve over time.
Choosing the care setting
As your loved one's illness progresses, their care needs may change. It’s helpful to discuss where they wish to receive care, both currently and in their final days. These preferences may differ, and they may reconsider their choices over time.
They might consider factors such as:
- being free from pain and discomfort
- staying close to family and friends
- remaining in familiar surroundings
- maintaining privacy and dignity
Since everyone has unique priorities, what's significant for one person might not be as crucial for another.
You might also provide some care, especially if your loved one remains at home. It’s important to assess the level of support you can realistically offer without compromising your own well-being. While it's natural to want to do everything possible, it’s crucial to balance their needs with your own. Don’t feel guilty if you can’t provide all the care you wish to; discuss with your loved one what they prefer and what you can offer.
Healthcare professionals will try to honour your loved one’s wishes regarding their care setting, but it might not always be possible to provide the necessary care at home if their needs are too complex.
Practicalities
There may be necessary aspects and arrangements which need to be made or considered either at once or over the following weeks. As these decisions have to be made at a time of personal distress, it may be helpful to contact a friend or relative to support you.
Coping with grief
When someone dies there will be many practical things that need to be attended to. This can mean that you start to grieve once these things are completed and the people around you begin to return to their everyday lives.
Grief: navigating a personal journey
Grief is a personal experience, and what you’re feeling is a normal response to loss. There are no right or wrong ways to grieve—what’s important is finding what helps you cope.
Grieving can be painful and isn’t something that can be rushed or "fixed," but over time, the intensity of your grief will lessen, and you’ll find ways to adjust and move forward without the person who has passed away.
If after several weeks you find that you are not coping with your emotions or your grief is overwhelming, it would be appropriate to seek help from your GP or you can access GriefChat, a specialist service, via the Arthur Rank Hospice webpage on bereavement.
- GriefChat is a completely free service and is available Monday-Friday, 9am-9pm (except Bank Holidays).
- GriefChat provides emotional support for bereaved people, access to trained bereavement counsellors, via a webchat and referral into other specialist bereavement services.
- GriefChat counsellors are experienced in supporting bereaved people and will listen to your story, explore how your grief is affecting you and help you to find any additional support you might need.
- GriefChat was created by bereavement experts and by clicking on the GriefChat box below, you can chat directly to a specially trained bereavement counsellor.
- Please be aware, GriefChat is a third-party service and not an Arthur Rank Hospice Charity service.
The service is available to all Arthur Rank Hospice Charity website users over the age of 18. Where it may be identified that a service user is under the age of 18, GriefChat counsellors will outline the terms of service provision and direct the child/young person to other appropriate provision.
Unpaid carers
If you have been caring for the person who has died, you may also feel the loss of your caring role. You may feel bereft and alone because the relationships that you have built up with different health care professionals have ended. You may have lost contact with friends while caring for your loved one, and meeting new people or re-establishing old friendships can seem daunting and tiring.
Grief Kind Space
Bereaved Cambridgeshire residents can access free, informal bereavement support, as Arthur Rank Hospice opens its doors, to host a Grief Kind Space, in association with national bereavement charity, Sue Ryder.
Two local hospices offer free grief support in Cambridge - Arthur Rank Hospice Charity
Sources of support
You don't need to feel alone. Below are some free to access resources, that may help you navigate through this difficult time.
Bereavement support resources - Arthur Rank Hospice Charity (arhc.org.uk)
Palliative Care Hub
A free phone service available to patients, relatives, friends and all healthcare professionals. Providing specialist advice and support to those with life limiting illnesses
The service is available 24 hours a day, 7 days a week.
Dial 111 option 4 for the 'Palliative and End of Life Care' option.
How the Palliative Care Hub can help
This 24-hour service is for anyone that needs specialist palliative care advice or support. It is available to patients, family/friends, carers, GP’s and other health care professionals (including care and nursing homes when the patient has been identified as palliative).
We will be able to give advice and support where able, signpost to appropriate services, transfer you to another healthcare professional that can better help you or complete necessary referrals to other services.
Calling this advice line will put you in direct contact with one of our dedicated Clinical Nurse Specialists, who will aim to support you and ensure you feel safe and confident in the care you are receiving.
Cambridgeshire and Peterborough Integrated Care Service (ICS)
There is information on palliative and end of life care on the ICS website.
