When you are diagnosed with a condition which is likely to shorten your life, you may find yourself confused, shocked, scared or even relieved, because you thought something was wrong.
Amongst all the information, there is much to absorb. You may be given a booklet encouraging you to think about the future – whether you would like to talk to friends and family about what you would like to happen to you- about resuscitation, living wills, powers of attorney etc. This is generally not meant to scare or worry but more allow you to “get your house in order”. This does not imply you are about to die! We often give this information to people with lung, kidney or heart disease- as well as cancers.
There are many resources available:
NHS Choices provides an excellent web-based resource that you may wish to try.
Clinical Knowledge Summaries provides an evidence based pathway primarily designed for clinicians but also available for patients and their carers to look at too.
Macmillan have a wide variety of leaflets, contacts and advice. You may be referred to a Macmillan nurse or the district nurses through the hospital or in the community. They are a wonderful resource – providing information and support to you and your family on understanding what cancer is, diagnosing, organising, treating, coping and other resources related to cancer.
You may be referred to the Willow Wood Hospice in Ashton. Again, this is a fantastic resource. We have many patients who have attended the day hospice for years! there are activities, support of families and of course, the care and symptom control that being an inpatient can offer. We very rarely admit patients to the hospice to die, but often to help families out for a bit or have some extra help with control of pain, for instance.
The experiences of living with dying and bereavement are very varied. HealthTalkOnline have interviewed a variety of people who describe their experiences of caring for someone with a terminal illness as well as living with dying.
It is very much our aim that if you are dying, many people wish to be at home and we help that to happen if that is what you and your loved ones want too. We work on visits to the home if required, with our district nurse and Macmillan nurse colleagues, as well as Marie Curie, palliative care team and so on, to make sure that you and your loved ones feel reassured, comfortable and in control. Here are some great film guides for carers that help you to be better looked after. It is possible to ensure that you are not admitted to hospital against your will, if that is what you want. We believe that helping a patient, who quite often is like an old friend to us, to have a “good death” is the most important role we could have in general practice.
It might be that you have a living will, or very specific ideas about your condition; faith, fears or misconceptions and it is important to use that you make these felt to your carers. One thing we tend to organise is a special package of medication that can be given in or out of hours by district nurses, to include relief of symptoms should they arise and you are not able to swallow, for instance. This might include nausea, pain or general issues. These medications can be administered without having to wait for doctors to come out and has been a great step forward over the last few years. Quite often, these medications are not even used but knowing they are there can be reassuring! Sometimes, we get them in place, do all the paperwork in case the patient deteriorates and then find they pick up again and we can take them away again!
We have a very well established End of Life Care register for supporting patients and families. This usually starts when your doctor thinks you may not survive for longer than a year. The doctor will then ask if you would like to be put on a palliative care / end of life care pathway. Your doctor will discuss with you what plans you may have, who your next of kin is and whether you would be happy for your End of Life Care wishes to be shared with other services. (Your doctor will clearly explain who this may involve so that you are clear about this). The doctors at the surgery and the district nurses, Macmillan nurse and long term condition team meet approximately monthly, (but also by phone or email in between times if required), to discuss patients whose care has been “stepped up”. The GPs have access to the Christie Portal so that we can also access the Christie hospital electronic health record on behalf of the patient and hence access the most up-to-date results, management plans and encounters patients may have had with their medical team there. This is a good opportunity for us to share concerns, ensure that patients have received information, had social funds released, if required and any other aspects of care for individuals and their families that need to be shared between carers. This often avoids duplication of important fact finding but hopefully ensures that all carers are well informed. We encourage patients to also access their electronic health records so that they can also see their wishes are recorded and can be shared by yourselves via the internet or smartphone / tablet (iOS / android). Once it is felt that you may have only weeks to live then the doctors may also issue a “statement of intent” form which indicates in the event of you dying out of hours when the surgery is shut then the doctor would be happy to certify your death. This helps to prevent having to call the police and being transferred to the police mortuary for an “expected death”. Your doctor may also discuss with you or your next of kin your dying wishes and in particular what you would like to happen if you were to collapse and become unconscious. This is important for people who are increasingly frail but may also apply to others who are nearing death and for whom cardiopulmonary resuscitation may be deemed futile. See important advice by Dr Gordon Caldwell, a consultant physician, describing this problem he sees regularly in hospital when these issues have not been discussed. If this is the case for you then discuss this with your doctor who can then record your wishes to have a “Do Not Attempt Cardiopulmonary Resuscitation” (DNACPR) and provide you with an important lilac coloured form which would be instantly recognisable by all staff including ambulance crews too. You can watch a video Dr Caldwell has done below
The out of hours doctors will have been informed if you are one of those folk we are more involved with, so that they can respond quickly to you should you call. They will know what medications you take and what your diagnosis is. We are increasingly finding that patients like to have access to their own GP records so they can give more information if required. In some of the local care homes and nursing homes, the staff can have access to this information, with patient and family consent. Please email us on [email protected] or get in touch with the practice if you would like to know more about this service.
Whilst on the subject of planning ahead, why not register “my funeral wishes” too and get peace of mind knowing that all your requirements have been taken care of in advance. Here is a great resource defining what rights you have at the End of Life too made by Compassion in Dying.
We have started a research pilot (in conjunction with Haughton Thornley Medical Centres, Haughton Thornley Patient Participation Group, NHS North-West, Manchester University, NHS Tameside & Glossop) in a nursing home to let specially trained and qualified nurses have access to the full GP electronic health record to help these patients get the best care possible. For further information about this pilot and to watch a talk Dr Hannan gave to the Primary Healthcare Specialist Group about the need for this and an approach that could be taken, please click here.
Here is an excellent blog written by Dr Kate Granger, a Specialist Registrar in Elderly Care Medicine and who is also suffering with a terminal cancer giving her perspective on End of Life Care, dignity, compassion and care.
We would encourage you to let us know if you have any queries about any of the issues mentioned above but also invite you to check out the links to further sources.