End of Life Care
Survival rates for cancer are improving but sometimes patients will be told that their condition can no longer be controlled and treatment will stop. ‘End of life’ care is the care provided for people who have an advanced, progressive and incurable cancer and focuses on improving the quality of life for both the patient and for people close to them so they can live as well as possible until they die.
During the development of our website, ‘end of life care’ has been the subject of considerable discussion within the Cancer Patient Forum. Cancer is now talked about much more openly but death and dying can still be difficult topics to approach. However our members felt strongly that the topic should not be avoided and end of life care should be included as part of the ‘cancer journey’.
As a Patient Forum we are certainly not qualified to offer advice. Each person and family will deal with their situation in their own way and the healthcare team should be there all the way, offering help with the physical, emotional and practical aspects of care. In this section we provide signposting to a few sources of support with a particular focus on what is available in North Wales.
Who is there to help ?
The Healthcare Teams
For people who are nearing the end of life the ‘gold standard’ of care is about giving someone the right care, in the right place at the right time. Wherever a patient is being cared for – home, hospital or nursing home – the healthcare teams should be working together to ensure that the physical, emotional and practical needs of both the patients and their families are listened to and met.
Our Palliative Care section gives details of the various teams who will be involved in caring for someone who is nearing the end of life and describes the different types of care that each team can offer. The teams will work closely together to provide the care and support that is needed and should share information about the wishes and preferences of the patient and those caring for them.
If care is being provided at home it can be helpful to make an appointment with the GP or specialist palliative care team to talk through what may happen and to make a plan for dealing with emergencies, should they occur. Thinking ahead can sometimes help prevent unnecessary admission into Hospital and may increase the likelihood that patients will be cared for according to your wishes. It’s important to know how to reach the district nurse or out of hours doctor. The GP and district nurse will also be able to refer / signpost to other sources of help and support in the community.
Hospices specialise in the care of people who are dying, although their service is not just about providing care in the last days of life. In addition to inpatient facilities, hospices offer a wide range of day care services such as complementary therapies, counselling, spiritual care, as well as pain control for anyone who has a terminal diagnosis. Even if a patient has not been referred for hospice care, the hospices are happy to be contacted directly and will be able to provide more information. Our section on Palliative Care provides details of Hospices in North Wales.
Many people (roughly 6 out of 10) express a preference to die at home, but this choice is very personal and may depend on many factors, including support from family and friends. Your choice may also change as time goes on.
For people who prefer to die at home there are many services that are there to support families and friends. The GP, District Nursing Team and Specialist Palliative Care Teams will be able to tell you about the sort of support they are able to offer – this will include nursing care, controlling symptoms, emotional support, practical advice and rapid access to dedicated telephone helplines.
The Hospice at Home Services and Marie Curie Nursing Services specialise in providing nursing care at home for people who are approaching the end of life. Please follow the links for details of services in North Wales.
Marie Curie and Macmillan Cancer Support have worked together to produce a booklet aimed at people who want to be looked after at home at the end of their life, explaining the physical and emotional changes that may take place during their last weeks and days. The booklet also provides information on what to do after someone dies, and includes a list of organisations that can help.
The links below will take you to information designed to provide support and comfort at a difficult time.
Macmillan Cancer Support. This link will take you to fairly comprehensive information around many aspects of the physical, practical and emotional difficulties that can come with a terminal cancer diagnosis. The website includes video clips of people with advanced cancer, and their carers, talking about their experiences.
Cancer Research UK. This link has detailed information about coping with cancer symptoms, strong emotions, and other difficulties people with cancer may face during their last few months or weeks of life. There is also information to help and support carers, friends and relatives of someone who is dying.
Marie Curie. This link will take you to some basic information for patients who are nearing end of life.
Healthtalkonline. This link has more than 40 recorded stories of people who are living with a terminal illness and who share their thoughts and experiences.
Macmillan Cancer Support also produces the following free booklets which can be downloaded here, but are also available free of charge from the Macmillan Information and Support Centres in North Wales.
Download and view ‘Dying with cancer’
Download and view ‘Coping with advanced cancer’
Spiritual and Religious Support
Some people may find that they become more aware of spiritual feelings or religious beliefs as they approach the end of life. Spiritual and religious leaders are used to dealing with uncertainty and with people who are distressed. They may be able to help you find peace of mind.
Our section on Spiritual support will take you to information about Hospital chaplaincy and multi- faith services in North Wales.
People, whether they are ill or not, are increasingly being encouraged to talk about death and dying and to think about what their preferences might be for their future care. A lack of conversation is perhaps the most important reason why peoples’ wishes go ignored or unfulfilled. Situations can sometimes arise when it’s difficult for your healthcare team or for the person close you to know exactly how you would like to be cared for.
There are professionals who will be able to help you make a plan for your future care. You can ask any member of your healthcare team about making an ‘advance care plan’ and they should be able to advise you on the best person to talk to. In some areas of North Wales an ‘Advanced Care Planning Document’ is being tried out by GPs and community healthcare teams – you could ask whether this is available in your area.
An ‘advance care plan’ is a general statement of your views and wishes. It can indicate the treatment you would prefer and can also include non-medical things such as your religious beliefs. You may want to express a wish to refuse treatment in very particular circumstances and a copy of this statement would be kept in your medical notes. These advance statements are not legally binding but they must be taken into consideration by the people who are involved in your care.
It can be helpful to involve your family or friends when you are thinking about your health care choices so that you can talk things through with them and they are aware of your wishes.
It isn’t easy to talk about these things. If you have questions about advanced care planning you may like to get in touch with the Macmillan End of Life Care Facilitator who works in partnership with palliative care teams across North Wales:
Macmillan End of Life Care Facilitator
01978 727 499
The links below will take to you to further information and resources about planning for end of life that you might find helpful:
Dying Matters is a website which has been set up by the National Council for Palliative Care and promotes public awareness of dying, death and bereavement.
NHS Choices provides a guide on planning ahead for end of life
Download and view ‘Your life and your choices: plan ahead’ (Macmillan Cancer Support)
Support for Families and Friends
Caring for Someone with Advanced Cancer
If you are caring for someone who is approaching the end of life you will have your own needs and worries that can be difficult to talk about. But there are sources of information and support for you too.
If you are looking after someone at home your GP and District Nursing Team will probably be your first point of contact if you have concerns about care of the patient or about your own wellbeing. Our section on Support for Carers also provides a wide range of general information about local sources of help and support.
The links below will take you to more specific information for people who are caring for someone who is terminally ill with cancer:
The National Council for Palliative Care, in collaboration with Hospice UK and Sue Ryder, has produced an award winning booklet – ‘What to expect when someone close to you is dying’.
Download a copy here
Macmillan Cancer Support provides information about caring for someone at the end of their life It talks about what to expect and what you can do to help the person you are caring for to be as comfortable as possible.
Marie Curie Cancer Care has produced a series of films to help you care for someone who is getting weaker as their illness progresses. The films focus mainly on helping a person with their personal care, helping them to move, and supporting them with everyday living.
Immediately after the death of someone close to you, a member of your healthcare team should be there to offer emotional and practical support. The GP should be made aware of what has happened.
The Macmillan Cancer Support website provides information about some of the practical things you may need to think about.
The Department of Work and Pensions produces a free booklet providing help and guidance about what to do when someone dies.
Download and view ‘What to do after death’
If you are looking for further information your local Macmillan Information and Support Centre may be able to help, particularly with signposting to local services and sources of support.
If you have financial concerns you may like to go to our section on Money and Benefits. You may be entitled to bereavement benefits.
For many people bereavement is the most difficult experience they will ever have to face. Everyone experiences grief differently and will often rely on the help of family and friends to get through things. It can take a while before you feel able to get back to some ‘normality’ and to begin thinking about plans for the future.
If you are having difficulty coping with your feelings and emotions it’s important to talk to your GP. They may be able to refer you to a counsellor or suggest other sources of local help and support.
Below we have brought together a few suggestions for other possible sources of help:
Cruse Bereavement Care North Wales provides one to one bereavement support or counselling for adults and children through the medium of Welsh, English, Polish, Italian ,Spanish and BSL (British Sign Language).
Cruse also runs a number of support /social groups across North Wales. It is important to make first contact with these groups through the Cruse Administrator (contact details below).
Upper Colwyn Bay:
Meets every three weeks on Tuesday afternoons 2pm – 4pm
Upper Colwyn Bay
Meets first Wednesday of each month 2pm – 4pm
201 Rhuddlan Road
Meets second Wednesday of each month 1100am – 2pm
The Victoria Hotel
Trearddur Bay :
Meets last Wednesday of each month 12pm – 2pm
The Treadddur Bay Hotel
Further information about any of the services offered by Cruse can be found using the details below:
Cruse Bereavement Care North Wales
St David’s Priory
0844 561 7856
Hospices in North Wales provide bereavement support services, although some of these may only be provided to people who have been cared for by the Hospice. If you are feeling in need of support the Hospices are happy to be contacted directly and will provide further details. Contact information for Hospices in North Wales can be found in our section on Hospices.
Bereavement Support for Younger People is available through a number of National and local organisations, details of which are included in our section on Support for Families with Young Children.