Hoping for the Best and Planning for the Worst

This article has been written jointly by Birmingham Hospices and BVSC’s PHB End of Life project. Sharon Hudson at 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.

COVID-19 (coronavirus) – advice for people, families and communities planning for the end of life care and bereavement support

This can be an especially difficult time for people who are receiving end of life care and their loved ones. It is important now that we all know what is important to us, to know what matters and we share it. Hold on to the little things that matter and let us care for each other.

Here is some information you may find helpful:

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.

You can find out more about the restrictions in place on visiting someone in a University of Birmingham NHS Trust hospitals here

More information you may find useful in 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). 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 cared for by those you are living with and Community and 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 that here
  • The My Wishes App and Website can help: https://www.mywishes.co.uk/how-it-works

Wills

  • If you are thinking about writing your will, this helpful blog here talks about how to do this in light of the Coronavirus
  • You can find Government guidance on making a will here: Information on writing a will

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 the 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 here
  • You can contact your local hospice team for advice and guidance even if you are not known to them
  • End of Life Doulas are offering non-medical support. Contact form here or call 07887 840663
  • Please use the Hospices of Birmingham and Solihull (HoBS) central patient number:0121  809 1900

Your local Hospice Numbers are:

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

Link: Get information about looking after someone who is dying

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 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 BCC Funeral Guidelines

Further information

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 here

What else you can do?

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 pjrookes@gmail.com or 07703336088