If you’re receiving end of life care, now will be an especially difficult time for you and your loved ones. That’s why we’ve been leading on a project called ‘Hoping for the Best, Planning for the Worst’ – an informative guide for you, your family and our communities during this uncertain time.
We know how crucial it is that you share your wishes and what’s important to you, that you hold on to the things that matter most, and that your family receives support too – which is why this guide is here to help you. Keep reading to find out more…
Getting the right help if someone is very ill and not getting better
If your loved one is very ill and not getting better, there is advice available.
What services are available to you?
- Contact your own GP who will speak to community nurses and palliative care services to help and support you.
- If you are known to District Nursing Services, please contact them through the single point of access number: 0300 5551919.
- Palliative Care Services are available to support you at this time. Some common questions about COVID-19 and palliative care support can be found on the Marie Curie website.
- You can contact your local hospice team for advice and guidance, even if you are not known to them. Please use the Hospices of Birmingham and Solihull (HoBS) central patient number: 0121 809 1900, where the team will be able to help you.
- End of Life Doulas are offering non-medical support. Use this contact form here or call 07887 840663.
Your local Hospice Numbers are:
- Birmingham St Mary’s Hospice: 0121 752 8798
- John Taylor Hospice: 0121 465 2000
- Marie Curie Hospice Solihull: 0121 7033600
- St Giles Hospice: 0121 378 6290
What can you do to care for someone who is very ill at home?
If you are caring for someone who is very ill or dying at home, there are things you can do to help them feel comfortable – from helping with their pain to moving them in bed. Here is a link to useful advice and guidance about this
Thinking about and planning for your care
It is important to be prepared in case you or a loved one contracts COVID-19 and becomes seriously ill. This is especially important if you or someone close to you is in a higher risk group (people with serious underlying medical conditions and older people for example). During a pandemic, medical decisions might need to be taken very quickly. Having thought about different situations which may arise is better for you, your loved ones and helps the medical professionals looking after you to provide the care you want.
Here are some important questions to think about:
- If you were to become seriously unwell due to an infection such as the coronavirus, how would you like to be cared for?
- Is there anyone that you would like to be involved in future decisions about your care if you were to become unwell (e.g. a friend, family member or carer)?
- If you became seriously ill and thought you might die, where would you want to be cared for?
- Would you want to be admitted to hospital where more aggressive treatments are sometimes appropriate (e.g. being put on a ventilator)? Or would you prefer to be cared for at home by those you are living with, along with community/hospice nurses with GP support?
- If your heart stops beating and there was a chance that it could be restarted with cardiopulmonary resuscitation, would you want a medical team to try this? This is maybe something you have never thought about – you can find out more about why it is important here.
Some specific treatments and interventions will not work for people who have complex underlying health problems, or when people are very frail or sick. It is important that you discuss with a health professional what treatments might be available and how they can help you.
There may also be some interventions and care options which you are not aware of, but which could greatly improve your quality of life (e.g. palliative care). Speak to a health professional to learn what might be available for you.
- Your doctor may talk to you about the ReSPECT process, to help you think about your treatment and care. You can find more information about ReSPECT, here.
The My Wishes App and Website can also help empower you to make the best decisions for you, your future care and those you care about. Find out more by clicking here.
Visiting restrictions in hospitals, hospices and care homes
Due to the COVID-19 pandemic, there are visiting restrictions in place at hospitals, hospices and care homes to prevent the virus spreading. If you are ill and an inpatient, you may feel isolated away from family and friends. If your loved one is ill, you may feel uninvolved, helpless and worried about their care.
What you can do
- Everyone should talk to family members about their wishes and plans in advance. This might include financial arrangements. This will be helpful so you know what is important to your loved one who is ill, or who is at risk of becoming very ill.
- Make a plan so you and your family can communicate with someone who may have to go into an inpatient unit. Make sure they know the best person to contact regarding a loved one’s ongoing care and decision making.
- If you can, provide IT equipment to keep in touch with someone who is ill while you cannot visit them. You can use FaceTime, Zoom or Facebook Live, for example, to keep in touch.
Here at Birmingham St Mary’s, we have visiting restrictions in place to protect the safety and wellbeing of our patients, their loved ones and our staff. These restrictions are reviewed daily, so please take a read here to find our most up-to-date information.
Sorting your will
Sorting your will can give you peace of mind that the people you love will be provided for. If you are thinking about writing your will, this helpful blog talks about how to do this in light of the Coronavirus. You can also find Government guidance on making a will here.
Planning a funeral in exceptional times
Due to the COVID-19 pandemic, funerals are now limited to only allow close family members to attend to reduce the spread of the virus.
Information you may find useful about funeral planning
Following national guidance and to ensure that social distancing takes place, from 26 March 2020, new emergency measures will be put in place for Birmingham City Council bereavement services.
Where funerals are taking place, attendance will be reduced to six people, consisting of the immediate family only. This does not include the official that is conducting the service. No person diagnosed as suffering from COVID-19 symptoms is permitted to attend a funeral until they have been confirmed as recovered. Services will be a maximum of 30 minutes and funeral directors will be able to assist with the rules about social distancing.
More Information about funerals in Birmingham can be found on the Birmingham City Council website.
- Planning a funeral in exceptional times.
- It is now possible to register a death online.
- Advice from Cruse Bereavement Care on how to stay connected with a funeral when you can’t be there.
- Advice from the National Association of Funeral Directors.
- Current advice from The Sikh Council UK can be found here.
- Current advice from the Muslim Burial Council.
Coping with grief and supporting someone else going through bereavement
During the global coronavirus pandemic, we are facing a tragic loss of life, often under very difficult circumstances.
People who have been bereaved at this time may experience additional and deeper emotions because of the restrictions in place due to COVID-19. Familiar people they would turn to and usual support networks may not be accessible. There are some helpful support resources from Cruse Bereavement Care here.
Support from Birmingham St Mary’s Hospice
We offer a number of bereavement services for adults and children. Find out more by taking a read here.
What else you can do?
- Contact Cruse Bereavement Care or the Counselling Directory.
- Bereavement support organisations lists.
- Get advice about supporting children through bereavement in COVID-19 times.
- Get advice about supporting young people through bereavement.
- Get support for people widowed young or whose child has died.
Further information you may find useful
Spiritual & Pastoral Support
At a time when we face a crisis in our lives, many people who do not regularly attend a place of worship seek to make sense of what is happening, through prayer, reflection, and by receiving the spiritual and pastoral support from an appropriate person of faith. This is particularly true during the current COVID-19 pandemic, during which physical distancing adds to the sense of isolation. Most places of worship, of all faiths, have a website, which contains their contact details. Most have a social media presence and many are live-streaming their services and other points of connection.
If anyone has trouble in contacting a place of worship please email or text The Birmingham Council of Faiths and they will do their best to assist. Email firstname.lastname@example.org or call 07703336088.
This article has been written jointly by Birmingham Hospices and BVSC’s PHB End of Life project. Sharon Hudson at Birmingham St Mary’s Hospice is the lead for the piece, supported by Elizabeth Hancocks, Deputy Director of Public Health. Anna Locke and Ruth Nelson have also contributed.