What to expect in the last year of life
The last year of life may be turbulent with good and bad days. Some days you may feel full of energy and others you may feel low.
There may be physical reasons for these changes, such as symptoms relating to your condition. Having a healthcare professional review your medication can ease your pain and symptoms. It is also a very emotional time for everyone involved but there are services which can provide information and counselling as well as practical support.
Preferred place of care and death
Many people prefer to spend their final days at home, however, not everyone does. It is important to discuss your decision with your friends, family and carer as well as your GP and healthcare team, as everyone involved should try to make sure your wishes are honoured.
If you are in hospital or hospice and your condition is stable, you could be discharged to return home, to a care home or move from hospital to a hospice.
If your preferred place of care is a hospice, your healthcare professional will try to support your wishes but it may depend upon availability of beds.
Care at home
There are a variety of healthcare professionals who you may be referred to for support, by your GP or other services.
You GP will primarily be responsible for assessing your symptoms, like pain, and prescribing medication for these. They may also refer you to other specialist services like the hospice for advice.
Community nurses work closely with GPs and other healthcare professionals. They will assess your needs and help co-ordinate your care by monitoring and treating any difficult symptoms you may have. They provide a range of nursing care interventions, such as administering medication.
It is the nursing team’s responsibility to make sure arrangements are in place for the continued supply of medication, if they are administering this.
Your family, friends or carers may be asked to collect medication which has been requested from the local pharmacy.
Community nurses may arrange for you to have equipment to help with skin integrity, continence or manual handling issues. They can help with showing your family and carer how to move you and take care of your personal needs, as well as how to reduce the risk of pressure ulcers.
A pressure ulcer is localised damage which occurs to the skin and/or underlying tissue, usually over a bony prominence. It is caused by unrelieved pressure, shearing or a combination of both.
If you begin to spend more time in bed, you may require extra equipment, like an electronic profiling bed, which will help your family and/or carers providing you with personal care.
If you require more personal care than your family can provide, the community nurses and other healthcare professionals can refer you to a care agency to provide this in your home.
The community nursing team will make sure you have contact numbers of who to call if you are struggling to manage your pain or other symptoms..
You may come into contact with other services. Please be aware that the contact details on these pages are for teams in Kent. If you are in another part of the UK, you will need to contact your local NHS team for support.
- Urgent Care Response: The service aims to help you avoid unnecessary hospital admissions, support hospital discharges and provide unscheduled nursing care out of hours, including management for patients at the end of their life.
- Home Treatment Team: Providing individualised Treatment to patients in crisis. Patients need to be referred by a GP, healthcare professional or care home professional to use this service.
- Frailty Home Treatment Service (east Kent): Providing individualised Treatment to patients in crisis. The team pro-actively manage patients with complex frailty needs through anticipatory care planning and comprehensive geriatric assessments. Patients need to be referred by a GP, healthcare professional or care home professional to use this service.
- Community hospitals: A community hospital in-patient unit may provide end of life care to patients if it is difficult to provide this at home. Patients need to be referred by a GP.
Hospice care and support
Local hospices provide support and palliative care to people until the end of their life. It can help anyone with end of life care needs, regardless of diagnosis, including dementia.
You can refer yourself to the Heart of Kent Hospice and Hospice in the Weald or you can be referred by a friend, family member or healthcare professional, providing it is with your consent.
Referrals are welcomed from consultants, GPs, clinical nurse specialists and community nurses for Pilgrims Hospice.
Support in care homes
If you live in or are considering living in a care home, ask staff how they support patients at the end of their life. Residential care homes will work alongside GPs and other health and social care professionals to provide support.
Nursing homes always have registered nurses who will support individuals needs and many of them have completed additional training, specialising in end of life care.
Each home will have assigned GPs, who support any changes required to medication.
Specialist end of life healthcare professionals also help residents in many situations. Whether it is by giving advice about medication, visiting residents, or teaching staff about end of life care and how best to support people in the last few days of life.
The last few weeks of life
Physical changes and symptoms will vary, depending on the type of illness you have. As you become more ill, your medicines may be reviewed or stopped by your GP or nurse. If you have symptoms such as pain, nausea or breathlessness, the GP or specialist nurse may prescribe anticipatory medication to be in your home for use in an emergency. This will avoid any delay in relieving and managing your symptoms.
They will advise you it is important to keep the medication in a safe place. It should be stored out of sight and out of reach of children.
Community nurses may administer some of the medication if you are unable to swallow or you have an increase in your symptoms which are not being controlled. They will discuss this with you and your family.
Any anticipatory medication can be administered by your family if this has been discussed and agreed with your healthcare professionals and GP.
The community nurse and/or hospice may increase their support and visit you more frequently.
Keep in regular contact with your GP, community nurse and hospice team to make them aware of any changes to your condition. Your family and/or carers can help you with this.
The last few days of life
A person in the dying phase will become weaker and probably have difficulty swallowing. This may mean swallowing tablets or liquid medication becomes too difficult. See our advice
While everyone’s experience of the last few days of life is different, you will gradually become weaker and have less energy. You may notice changes in your breathing pattern and your breathing may become noisier. It can help to know how to sit or lie down in a comfortable position.
You may become sleepier, have little or no appetite and lose ability or desire to drink. Small sips of water or ice chips can help keep your mouth moist. You will be supported with this and helped with mouth care. Because there is little fluid being taken in, urine will become darker and more concentrated. If you are having problems with incontinence or you are having difficulty passing urine, causing discomfort, the nurse may advise a urinary catheter.
You may become restless or agitated. This can be caused by many things. Your family, friends or carers can offer quiet reassurance which can be comforting. The nurse can offer medication to help settle your anxiety.
You may also begin to withdraw from your family, friends and pay less attention to your surroundings.
You may experience some or all of these changes, which are all normal processes as you approach the end of life. Your healthcare professional can discuss with you and your family, friends or carers, how best to support you through these changes.
Community nurses may increase their visits to every 24 hours if your symptoms require monitoring. If you have a syringe pump this will need re-priming every 24 hours.
Nearing death
For many people, dying is very peaceful. Sometimes, though, death can happen quickly and the changes may be distressing for your family and/or relatives to see. The community nurse will be available to offer reassurance and support. You will usually slip slowly into unconsciousness and will find it difficult to wake up. Some people have phases where they are awake and can talk and then slip back into unconsciousness.
If you have pain or other symptoms, the community nurse can give you medication by injection or through a syringe pump.
In the last hours of life, your skin can become moist and slightly cool. Your breathing pattern can change, sometimes with long pauses between breaths until it stops altogether. Some people become more agitated as death approaches and may need a change in medication to relieve these symptoms.
These medications do not slow down or hasten death, they make sure you are comfortable and pain free.