For some patients and their families, it can helpful to look ahead. Planning ahead means thinking and talking about how you wish to be cared for in the final months of your life.
As part of the planning ahead process some patients wish to think about what type of funeral they would like. Who they would like to be there and if there is anything in particular, they would like to happen?
Whilst these can be a difficult conversation many people find this a helpful process and for the loved ones who organise funeral arrangements after your death it can be a comfort to them that they are carrying out all your wishes exactly as you wanted.
Preferred place of care
Asking where is your preferred place of care is an important question and one that your GP may discuss with you early on. This is because planning ahead when you are well means that discussions and decisions around your care can be made in advance. Many patients prefer to be looked after at home.
We can support families by offering visits from carers who can help attend to personal care and sometimes night sitters to give respite to the family. The district nurses and GP will be in contact with you and your family to support you. Sometimes patients are unable to remain at home or they and their family decide their care needs would be best met with 24-hour nursing care support.
District nurses are able to support you if you feel this is needed and advise you on how to proceed.
GPs and district nurses may take advice from the Specialist Palliative Care Team who may also ask to visit you at home or see you in clinic. If you are finding symptom control difficult sometimes a short visit to one of the hospices can helpful to stabilise your symptoms and get you back home feeling more comfortable. Hospices also offer daytime activities which patients and their families can find helpful.
Hospices are able to provide specialist care and a range of holistic (physical, psychological, spiritual and social) support to people with a life-limiting illness, their carers and families.
There are three hospices in Gloucestershire:
Leckhampton Court Hospice (Cheltenham) provides in-patient hospice beds, day hospice care and hospice at home care (Cheltenham, Gloucester and Tewkesbury)
Great Oaks Hospice (Coleford) provides day hospice care and hospice at home care (Forest of Dean)
Longfield (Minchinhampton) provides day hospice care and hospice at home care (Stroud and Berkeley, Cotswolds and Gloucester)
Allowing a natural death
As part of planning ahead your GP may ask to discuss with you about your care when you are in your final days of life. To “allow a natural death” is a written record of a decision to not treat someone with cardiopulmonary resuscitation (CPR) if they are so unwell that their heart has stopped beating and their lungs have stopped breathing. They commonly happen together, which is known as a cardiopulmonary arrest.
You may have already made a decision about not wanting to be resuscitated in a specific situation. However, if you haven’t made a decision about CPR and you want to, you should discuss this with your medical team or specialist nurse. You may also want to talk this through with your family, a close friend or a spiritual carer, such as a chaplain. The doctor will then discuss this decision with you. They should also let your family know what they recommend, unless you have asked them not to.
By discussing this with you early on when you feel able to talk to your Health Care Professional and or family an advance decision can be made. If you decide you do not wish to be resuscitated and allow a natural death your doctor will complete with you a “yellow sticker” that is placed on the front of your notes so that everyone caring for you is aware of your wishes.
Just in Case Boxes
Just in Case Boxes are available for GPs to prescribe in the Forest of Dean and are being rolled out across Gloucestershire. This is a box containing anticipatory medication that a person may need for the main symptoms at end of life (pain, nausea, secretions, agitation). It is kept in the person’s home ‘just in case’ it may be needed and is particularly useful at evenings and weekends if urgent or emergency services have been called out.
Caring for someone nearing the end of their life
Caring for someone who is nearing the end of their life is very difficult. This can be a sad and challenging time for you; you may want answers to questions which are difficult to ask.
This leaflet gives you details about several organisations that may be able to help:
What happens in the final days
In the final days of life your body may undergo these changes. The leaflets below can help to prepare you and your family with what may happen.
What to do after death
The death of your loved one will be a challenging and difficult time. We hope that these resources can clearly outline what you need to do. Its important to realise that when your loved one does die that you feel comfortable to deal with it in your own time.
When you are ready call the GP or District nurses and they will attend. If this happens out of hours you will need to call the out of hours service on 0300 421 0220 and explain that your loved one has died and that this is an expected death. Please do not call 999 if this is an expected death.
When they have been and you are ready, you can contact the funeral director who will make arrangements to take your loved one to their Chapel of rest.
You will need to contact your GP and they will talk through what has happened and issue a death certificate. This is then used by you to register their death. If your loved one wishes to be cremated a separate form will be completed by your GP. This form then has to be signed by a further two GPs.
They may contact you to talk through what has happened. This is standard practice and whilst difficult for you please do not be concerned.
Coping with grief
The death of a loved one affects us all in different ways. There is no right way or right time to grieve. Be kind to yourself and take each day as it comes. There is support if and when you need it.