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End of life, terminal illness and coronavirus

We’ve put together this information to help you understand decisions being made at this difficult time, what these will mean and support that is available to you.

This is a very uncertain time for many of you, and we know that a number of people in our community will be worried about their loved one who is approaching the end of life. We also know that a number of difficult conversations are happening across the country, so we’ve put together this information to help you understand decisions being made, what these will mean and support that is available to you.

End of Life and Support

We know that people will be worried about what the restrictions introduced because of the coronavirus (COVID-19) will mean for them, their treatment and will want to know how they can best access support.

  • If those with a terminal diagnosis have not talked about plans for their future care with a healthcare professional, it's a good time to do this now. Advanced care planning helps ensure individuals get the care they want. There are significant strains on the health service and hospices due to coronavirus but all parties will do their best to meet care plans.
  • It’s important those with a terminal diagnosis register as an extremely vulnerable person on the government’s website for coronavirus support, especially if they are unable to rely on friends and family for help
  • The most vulnerable will still be able to have carers and healthcare workers visit their homes to provide essential medical care and assistance. The number of visits and the usual staff may change so it’s important to contact the service providing care to see how they are adapting to the situation.
  • It’s important that contingency plans are put into place in case usual carers are no longer able to visit because of coronavirus. Advice about this can be found on the CarersUK website.
  • It may no longer be possible for loved ones to visit hospitals, hospices and care homes. There may be different rules in each individual case but it's important to make sure that you talk to your relevant medical, or care home team to see what the restrictions are for you.
  • If you have a terminal illness, or have been given a prognosis of less than 6 months to live, or have some other special circumstances, you may decide not to undertake shielding. This will be a deeply personal decision. We advise calling your GP or specialist to discuss this.

There are number of organisations that are available to help you make decisions and answer questions about end of life.

  • Marie Curie
    Marie Curie’s support line is open seven days a week to give information and advice to those with a terminal illness. They have content on coronavirus that covers the issues those at the end of life may experience because of the outbreak. They also have guidance on how to find local services that can co-ordinate palliative care.
  • Compassion in Dying
    They have a nurse-led information line, which is on hand to help anyone who needs support to talk through their priorities and options – 0800 999 2434 (Mon – Fri, 11am - 3pm).
  • Hospice UK
    Hospice UK have practical tips and advice for caring for a dying relative at home.
  • Macmillan Cancer Support
    Macmillan Cancer Support have resources on the impact coronavirus will have on end of life care.

Making decisions about treatment

We're aware many in our community have received letters asking them to consider their resuscitation status during this pandemic. This may come from your GP, asking about different levels of intervention of resuscitation, and perhaps asking if you would like to sign a DNACPR (do not attempt cardiopulmonary resuscitation) form. This is a form that tells your medical team not to attempt CPR, which allows medical teams to understand your wishes and make quick decisions about how to treat you.

This is of course worrying and distressing for all who have been asked to make this decision, either for themselves or for a loved one. It is important to remember that this is a deeply personal choice and you should make sure you feel fully informed to be able to make this decision. Remember, you have the right to say no and ask that the medical community respect your rights, wishes and feelings regarding your resuscitation status.

Your GP or medical team should explain to you what the different levels of resuscitation are, and what your decisions would mean. There's a really useful website called Talk CPR Wales, that explores the role of CPR in life-limiting or palliative diseases, and explains in more detail what a DNACPR means and the importance of having these conversations.

We also acknowledge the resources available to the NHS and Social care are not infinite, therefore difficult and distressing decisions will be made by medical staff on an individual basis. However, we want to reassure you we're doing all we can to get expert advice on your rights and what these look like when it comes to end of life care.

Jess La Q&A

Below, we’ve asked Clinical Nurse Specialist, Jess La, some of the common questions that we've heard from the community, to help explain these conversations, and what this means for patients.

We’ve been contacted about a DNR why is this?

Unfortunately, as this is an unprecedented time the team are having to plan each individual patient’s care in advance to be prepared for the uncertain future. In light of the national pandemic, this sadly means having to have these difficult discussions with you and your loved ones.

This doesn't at all mean that we think you'll deteriorate; but we must be prepared for the risk of the current climate, given the increased risk for those having chemotherapy.

How do those diagnosed with a brain tumour and their families decide whether or not to go into hospital to receive care if they become unwell with coronavirus?

If you're receiving oncology treatment, please get in touch with your key worker if they aren't yet re-deployed, as they will have a plan to protect you as much as possible, whilst receiving 'necessary' treatment for your diagnosis.

If you're not receiving any oncology treatment, it's likely that all outpatient clinic appointments will be a telephone consultation. However, each hospital trust have their own policy, so please refer to their website or they may send you a letter to clarify.

If a DNR is in place and ventilator support is not available for my loved one, what other treatment or care would they receive in hospital?

This depends on how your loved one is clinically. The team on the ward would always prioritise and ensure they are maintaining your loved ones comfort and ensure they aren't in any pain or experiencing any distress. They would also aim to treat any reversible causes i.e. infection

If we decide to stay at home what do we need to consider?

Make sure you remain up to date on government policies. Sadly, you can't have family or friends to visit. Make sure if you're at high risk of the virus, that you have support to help with necessary needs like shopping.

We would advocate finding activities to maintain mental stimulation and continue to move around little and often. Get in touch with your key worker / Clinical Nurse Specialist if you're unsure.

What support would there be from district nurses around end of life care and pain management?

Both palliative care teams and district nurses in the community are continuing the fantastic jobs that they do, but they too are inundated in this current climate. However, the teams prioritise their workloads and would definitely help support you and your loved ones if required. 

If this isn't already in place, you can ask your GP or key worker to help refer you for this support. You can also self-refer for palliative care input.

What additional advice would you offer to families at this time?

This is a highly difficult and uncertain time for everyone, so make sure you support your loved one (whether you're the patient or carer).

If you’re having chemotherapy, or receive bad news, this may, understandably, have increased emotional impact because of worry about coronavirus.

Continue to follow government guidelines, communicate with each other, try to find things to do independently or as a family, continue to move around little and often and don't hesitate to ask for help if needed.

We know that these conversations are incredibly difficult to have, but these are decisions that we'd encourage anyone who has been diagnosed with a brain tumour to have, regardless of the current climate. Planning ahead for the care and treatment you want to experience in the future can help you give you a greater sense of control during a difficult time. Learn more about Advanced Care Planning

Where to receive care for coronavirus (COVID-19)

There may be discussions around the preferred place of care should you or a loved one become ill with coronavirus. This is a deeply personal decision, and we hope that this information helps, but please know you can call our Information and Support line on 0808 800 0004 to talk to someone on our team as well.

We're here to support you wherever we can.

It’s important to consider the latest statistics, available at the time of writing, to help lessen the anxiety you may be feeling;

  • 80% of individuals tested have mild to moderate symptoms and are cared for at home.
  • 15% will require admission to a hospital for medical intervention due to severe symptoms.
  • 5% will be admitted to an Intensive Care Unit as they are critically ill.

Read our important steps that you can take to protect yourself from contracting coronavirus (COVID-19).

Under normal circumstances end of life treatment or care may be in a hospital or hospice setting, however, due to the pressure on NHS beds, sadly this may not be possible during this time of crisis. While we know many of you would want to be admitted to hospital it simply may not be possible in your local area, due to lack of beds and staff to look after you or your loved one.

We know that this can be a scary thought, and you might worry about the support available for you should you need to stay at home, or look after a loved one at home. It's important to remember that you won’t be looking after them alone, there will be others who will be able to help, such as locally provided carers and your District Nursing teams.

Recently, new funding has been made available from government for discharge packages. This will help ensure those being cared for at home have what they need to be safe and comfortable. Find out more about preparing for end of life.

It's so important that you have discussions about where someone would like to be cared for during the end of their life, as early as possible. This will help to give you and the relevant medical teams more time to put the right support in place to be able to access it when needed. Especially at the moment, given the capacity of local resources, having these discussions can help to prepare the services as early as possible to provide this support. We know these conversations can be scary, but will only help you and your family moving forward.

Funeral Expenses Payments

The last thing a grieving family should have to worry about is whether they're able to pay for the funeral. Funeral Expenses Payments are paid to eligible benefit claimants to help lighten the financial burden on families at this extremely distressing time.

And, from spring 2020, the maximum amount families can claim will rise from £700 to £1,000.

This payment is on top of existing allowances that pay for funeral necessities, such as burial or cremation fees. It can be used to help pay for expenses like the coffin, flowers and funeral directors' fees.

The increased payment follows recent changes that made it easier to apply for Funeral Expenses Payments.

Find out more

Getting your affairs in order

Now more than ever, you might be thinking about what the future may hold for you and your family. Having an up-to-date Will is one of the best ways to be sure your wishes will be honoured in the future and that loved ones will be provided for in the way you intended. 

We are committed to supporting you as you approach end of life which is why we have partnered with the National Free Wills Network to make the process of writing or updating your Will as smooth as possible. 

Anyone can make a simple Will for free via the National Free Wills Network. They partner with over 700 local law firms all across the UK to ensure that there will be a Will-writing service close to you.

Find out more

We appreciate that this is a time of uncertainty, and has created a number of difficult situations for our community. We’d like to take a moment to encourage you to call our support line if you need any help or simply someone to talk to, the team do an amazing job and offer a listening ear and impartial information at a time when you may need it most.

You can contact them on 0808 800 0004, Monday- Friday, between 9-5pm, or email them at support@thebraintumourcharity.org.

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About the author

I’m a member of the Children and Families Team at The Brain Tumour Charity and previously practised as a Speech and Language Therapist, working with children of all ages. I’m dedicated to supporting children, young people and families affected by a brain tumour by being there every step of the way to provide help, understanding and support, when it’s needed most.

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