What To Expect From End Of Life Care
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- 06-12-2021
When you or a loved one begin to fall ill, and there's no sign of improvement, it's hard to realise a future without them. However, it's something we all have to face, and there is thankfully a large support team available to you when you start approaching the end and need help planning ahead.
What Is End Of Life Care?
End of life care is the umbrella term used to define any medical attention, healthcare or support provided for an individual as they approach the end of their life. The term 'end of life' can span more extended periods than others but is typically used for the last year of someone's life.
You may have heard of palliative care being used in place of end of life. Still, they do mean different things, as end of life care is about improving the overall quality of life and ensuring the individual is as peaceful as possible.
Family and friends surrounding the individual who is expected to die will also receive support preparing for the future and can be offered bereavement support groups. In those last few days and hours of a person's life, you need a strong team around you, and that's where the end of life care comes in.
What Should I Expect From End Of Life Care?
Your loved one may determine what support they desire throughout this process, so it is entirely tailored to you and your family. Devising a care plan will benefit everyone greatly, as there will be no confusion about what is needed from the carers. Ideally, the health care team and the family will work in unison and adapt the care as the needs and symptoms change.
For this reason, the care team will listen and respect any boundaries you put into place. Comfort and dignity are of the most importance, and they will do all they can to bring those about in the last days of life. If, for example, the family member who is dying decides they are done eating and drinking and would instead gain sustenance through a drip, the care team can arrange this.
A loss of appetite is extremely common in these periods, from both the family and the dying person, especially as the emotional toll increases. For this reason, there is support that the family can seek out to help deal with the situation.
Depending on the severity and nature of the condition or illness, it can be arranged to remain at home and receive support.
Medication and treatments are available to relieve pain and distress from symptoms, such as breathing difficulties or skin irritations.
These can be arranged with your doctor, who should become a crucial member when devising the care plan. Of course, you can also choose to move to a hospital, hospice or care home if that's where you believe the most comfort and happiness will be achieved in those final days.
Wherever is chosen, you are entitled to the best high-quality care and support; emotional, physical and even spiritual.
Find out more about private palliative care at home in London.
Care Priorities
When receiving any form of end of life care, you can expect five main priorities to be met by the carers and wider support team. This is to ensure that everything is possibly being done for you and not let the main goals be forgotten.
Regular doctor visitations or appointments. These sessions will provide medical value to you and your loved one and outline if any major health changes have occurred. If death happens sooner than initially believed, your doctor will explain this to you before leaving that session.
The carers helping you and your loved one should talk to you professionally, empathetically and honestly. They are trained health professionals and have the knowledge to deal with your situation, so they will alert you if they notice any changes to the individual's condition.
The decision-making process is up to you if you want it to be. There is no better team than the surrounding family when deciding what is best for the dying person and keeping their dignity. Of course, you can still receive advice from the caregiver, and more control can be handed over to them if you desire.
Support for the surrounding people with a promise to meet their needs as much as possible. If you have difficulty sleeping and are experiencing restlessness or want someone to take more control for a few days, this is normal and okay to ask for. The same goes for the other side of the spectrum if you would like more space away from the caregivers. The needs of the entire family will be met.
Finally, a unique care plan will be created alongside the many people around the dying person. This will be explained to you calmly and with compassion to avoid confusion. The nurses, doctors and caregivers should be able to hear the wishes of everyone involved before making final decisions.
What To Expect In The Last Days Of Life
Knowing what is ahead when a loved one begins to die can be reassuring for the people surrounding them. This is an extremely distressing time, and there is no easy way around that, but if you can begin to understand what signs to look out for before they occur, you will become more knowledgeable.
Remember, most of the time, there is little-to-no pain experienced in the dying person when these signs begin to happen. They can look worse than they are and are expected in the process of dying.
01
Loss of appetite
It's expected for those at the end of life to begin eating and drinking less or experiencing a general loss of appetite.
The body is burning less energy and therefore requires less. Sometimes it takes too much energy and pain for the individual to eat, which is where a caregiver can assist.
In this instance, smaller mouthfuls of food and sips of water can be offered to avoid dehydration or hunger. Even if the dying person has a dry mouth, this does not mean they are dehydrated and may have had enough water already.
If drinking through a regular glass is too challenging for them, the person may drink through a straw, or they can apply lip balm or place ice chips in their mouth to combat dry lips. The individual may still want to eat, and sometimes the appetite can increase over certain days, but it's wise to take it day by day and have a backup plan.
02
Changes to breathing
It's also normal for a person's breathing patterns to change near the end of life. The body requires less oxygen as the body becomes less active, which can change how breathing looks and sounds.
The person may start having shallower breaths or longer pauses, which is entirely natural. Sometimes you will notice noise in the throat or chest of someone dying when they breathe, occasionally taking on the form of a rattling sound.
This doesn't cause them any pain and isn't a sign of low oxygen levels, and they may not even realise they're making the noise! Of course, loud breathing and fluid reduction medicine can be requested if the person is in pain or becomes a recurring problem. Still, it will generally be painless and not an issue to the individual.
03
Needing more sleep
You will notice a change in sleeping patterns, too, as the individual will spend more time sleeping and seem drowsy throughout the day. This isn't a bad thing, and they can spend hours being unconscious even before they die, which means they slip away peacefully.
In these moments of unconsciousness, you can still spend time with them and let them know you are there, as they could awaken suddenly and be confused. Holding their hand, speaking to them quietly or playing their favourite tv show or music in the background can all help.
04
Restlessness
It is also expected to become more restless over the last few weeks and days of life, which can cause some distressing episodes.
As the individual stirs in and out of consciousness, they can begin to become confused and disorientated.
Certain medications can also cause them to see or hear things that aren't there or have difficulty distinguishing who you are.
Agitation and anxiety are also common, but you can support them by sitting with them and reminding them they're not alone. Sometimes you will have to remind them who you are, and keep their surroundings calm as not to cause further agitation.
05
Changes to the skin
Colour changes to the skin are normal as the inner metabolism begins to change. This isn't a sign for distress and is caused by reduced circulation, meaning that patches on the body can change colour and appear bruised. The person may not even realise they are there, and more than likely isn't in any pain, but they can be alarming to see.
Notify your doctor if you're concerned about any marks on the skin or body, but alarming the individual could cause unnecessary stress and agitation. The breath can also become a more pungent smell, especially as their diet changes.
Extremities on the body can become colder, meaning that you should be prioritising the hands, ears, feet and nose as they will become the coldest.
06
Loss of bladder or bowels control
This can be incredibly embarrassing for those in the situation, but a loss of bladder control is entirely standard.
The muscles in the bowel and bladder region begin to relax, meaning that some people become unable to control their bodily functions as easily.
A nurse or caregiver can deal with this professionally and keep their dignity to a maximum, showing you and the family how to best keep the bed and furniture clean when this happens.
Many people also use incontinence pads or a catheter to remove the need to move for the toilet and remove any discomfort. As the diet and appetite become less, you will notice fewer bowel movements and stools, and the urine will become darker as they are intaking less liquid throughout the day.
Every person is unique, and the dying process isn't the same for two people. Sometimes these signs can span days or hours, entirely depending on many factors. Hopefully, this page has offered you some advice on preparing to let go, but there is much more to cover.
If you need further support, don't hesitate to contact our team or read more of our related blog as we continue to help families across the UK.
If you have questions about how to live better with Palliative Care, we hope this information has been useful to you.
We offer specialist home care services and live-in care for vulnerable adults throughout London. Get in contact today if you have a loved one that would benefit from professional care at home.
