Recognising the deterioration/dying phase
Please be aware - this information is for healthcare professionals
It is not always easy to tell when someone has entered the deteriorating/dying phase and is now actively dying. This can be difficult even for an experienced or specialist professional, as it is not an exact science. Sometimes a patient can appear to be dying and then they seem to improve slightly, though this improvement is often brief.
It’s important to remember that no two deaths are the same and that although we always aim for a ‘good death’ (one that is in general accord with the patient’s wishes), this is not always possible. The following guidance should be considered in the context of local care pathways and individual local plans.
You may find that this is a difficult time for you. For suggestions of how to cope, see our information about caring for someone in their last days and hours.
How will I know when a person is dying?
There are some signs to look out for in the list below that can help you identify if the patient is in the final days or hours of their life. You should use a combination of the following signs rather than relying on one or two for recognition of active dying, as there may be other causes for any symptoms you notice.
Someone who is showing signs that they are in the last few days of life should be monitored to see if they are nearing death, stabilising or recovering. They should also be given an opportunity to discuss their care, including a chance to change their mind about the type of care they want. Any changes should be recorded in their care plan. It is important that an individualised care plan outlining both personal and clinical care needs is agreed and available for all involved to access.
Some people may have difficulties communicating what they want. As a healthcare professional, you should take steps to establish whether your patient has any communication needs at this point. They may want or need to have a person with them when talking about their care preferences, such as an advocate. All information should be accessible and the patient should have access to an interpreter if necessary.
There are several tools available to help you identify whether a patient is deteriorating, including the Gold Standard Framework Prognostic Indicator Guidance , and the Supportive and Palliative Care Indicators Tool (SPICT).
Not eating or drinking
This can be caused by the body not requiring nutrition, the patient having little or no appetite, or that they’re finding it too tiring to eat and drink. If you think that swallowing is safe with no risk of coughing, you can try to offer sips of water from a teaspoon. Mouth care will now be very important.
It’s also important to remember that when the body is shutting down, overloading it with fluids and food can do more harm than good, as the body can’t process them. The balance between risks and benefits of giving food and drink must be made on an individual basis by a qualified clinician, such as a specialist nurse or district nurse and there should be a discussion with the patient and their family about the risks and benefits. Be aware that not all patients with a terminal illness will be known to specialist palliative care teams.For more information, see our page about hydration and nutrition.
Little or no swallow reflex
If the patient coughs when taking fluids or food, you should alert other professionals involved in their care, for example their GP, district nurse or specialist nurse. Medication may now need to be given by injection, transdermal patch or syringe driver.
Breathing may become shallow and your patient may pant at times. There may be long pauses between breaths. You may be able to hear secretions in the patient's throat as they breathe. You can try repositioning them so they are in an upright position. You may notice the patient has a breathing pattern that is very irregular and at times appears to stop completely and then restart. This is called cheyne stokes breathing. For more information, see our page about breathlessness.
The patient is sleepier than usual
This may lead to unconsciousness. The patient may be drowsy even when awake. This may last for several days. You should also consider that their sleepiness may be caused by an excessive dose of opiates and ask the district nurse or specialist nurse to check.
Changes to skin colour
There may be a blueness to the patient's fingers and toes (known as cynosis). This is due to the body starting to shut down to reserve resources for core functions. The skin across the body may become mottled or have a grey appearance. It may feel cold and clammy to the touch. Sometimes there is a variation in temperature prior to death. There may also be some swelling to the hands and feet. This could be caused by oedema.
Agitation and restlessness
It may be difficult for the patient to settle. For example, they may hallucinate and see family or pets who have died previously. They may not recognise familiar faces. It is important to be aware that chemical imbalances can also cause this. If the family agree to it, playing quiet music or putting on the radio may help to break a difficult silence. It may also settle an agitated patient.
If it’s appropriate, you could mention to the patient’s family that holding the hand of their loved one and gently stroking it could help soothe agitation and restlessness. Sometimes it will be necessary to sedate the patient.
The patient may lose bowel and bladder control because their muscles have relaxed. You may also notice that urine output is generally reduced, and the urine produced is dark in colour due to a reduced fluid intake.
Sometimes a patient’s eyes may appear to be half-closed.
How can I help the patient stay comfortable?
As the patient becomes less mobile and their skin more fragile, it is important to keep an eye on their skin and ensure that they don’t develop any pressure ulcers. While you shouldn’t disturb the patient unnecessarily they will need to be repositioned regularly. Pressure damage can be both painful and distressing, so any new areas of concern should be highlighted and documented immediately.
If you have known the patient for some time, you may know how they like to be positioned. If not, the family may be able to help you. Asking about this may help them feel more involved in the care of their loved one. You may know instinctively whether the person looks comfortable or not. Ensure that you make good use of any equipment that you have and order anything that is not available.
An unconscious patient may be heavier and more difficult to manoeuvre. You should refer to your local guidelines and policies on moving and handling for information on repositioning an unconscious patient. It is very important that privacy and dignity are upheld at all times.
I am worried about telling the family that their loved one is approaching the end of their life. How can I be certain the patient is actively dying?
You cannot be certain if only one or two signs are present. As time moves on and more signs appear, you may start to introduce the idea that the patient may die soon to the family. Most if not all of these signs can be distressing for the family. For more information on discussing death and dying with a patient and their friends and family, see our page about caring for someone in their last days and hours.
We also have information for friends and family about the final moments of life, which they may find helpful.
What if the patient’s condition seems like an emergency?
Preparing in advance is the key to effectively handling a palliative emergency. For more information, see our page on recognising emergencies. Palliative emergencies are rare and do not include impending death.
People in the last days of life may experience changes in existing symptoms, new symptoms or changes in their ability to take medication to manage them. In this case, prescribing medication in anticipation of symptoms can avoid a lapse in symptom control.
Generally, there will be an advance care plan in place, which may include a ‘not to attempt CPR’. Or, it may include a ‘Resuscitation or Do Not Attempt CPR (DNACPR)’. Doctors might make a DNACPR decision if someone is approaching the end of their life and resuscitation would deny them a peaceful, natural death. It’s important that you know where these documents are kept.
It’s not usually considered appropriate to attempt resuscitation on someone who is at the end of their life as it is unlikely to be helpful, but there may be occasions where the family expect or ask you to attempt resuscitation, or may call an ambulance.
If the person wishes to die at home, calling an ambulance should be avoided where possible. The DNACPR and advance care plan documents are your support. However, you should avoid arguing with the family if they insist on calling 999 themselves. If the patient has been added to the palliative care register at their GP surgery, the ambulance service may already be aware of their status.
What should I expect at the time of death?
At the time of death, the face may become very pale and relaxed in appearance, the jaw may drop open and the body will relax. There may be a few very shallow breaths before breathing finally stops. As the body relaxes, air will move around within it and you might be able to hear the last breath, which may sound like a sigh.
Remember that even when a person’s death has been expected, it can still be overwhelming or a shock for the family. There may also be a sense of relief that a loved one is no longer in pain. For information on what to do after a patient has died, see our page on care after death.
If and when appropriate, you could signpost to our information for bereaved family and friends.
Who else should I talk to?
- The specialist palliative care team, if involved. Not all end of life patients are known to them
- The patient’s GP
- A district nurse
Points to remember
- No two deaths are the same. Some are peaceful, some are not. Although we aim for a ‘good’, peaceful death, sometimes this is not possible.
- Be aware of care plans and advance wishes including DNACPR.
- Look for a combination of signs before saying that someone is actively dying. While you are not expected to be an expert, more signs will appear which will help you identify that a patient is actively dying.
- Maintain the patient’s privacy and dignity at all times.
- Be mindful of the family’s feelings. Although they have been expecting the death, they may not react how you expect. They may also have lots of questions. Try to be as honest as you can.
- Contact other professionals. Let them know if you think things have changed significantly and these changes have not been documented in the care plan.
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