End-of-life Care: Symptoms, Issues, What To Expect & How To Cope
There will come a time when we know that no further treatment can help to cure our loved ones’ conditions. At these moments, we need to prepare ourselves to provide end-of-life care instead.
Watching the health of our loved ones deteriorate and knowing that there is nothing more we can do to improve their condition is a painful process for many people. Nonetheless, even if the process is uncomfortable it does not have to be unbearable.
In this article, we will explain what end-of-life care is, signs of when end-of-life care is needed, and how you can care for and comfort your loved ones while coping with the challenges that arise.
What Is End-of-life Care?
End-of-life care is care that occurs when someone has stopped curative treatment. The goal of care changes from trying to improve one’s condition to make sure they have as high a quality of life they can receive before passing on.
End-of-life care is different from palliative care in that palliative care can also be given to people who are not terminally ill, while end-of-life care focuses on people whose conditions are considered incurable. Both types of care focus on reducing pain for your loved one, providing emotional support to family members, and helping them through bereavement to find closure.
It is important for family members to be mentally prepared when the need for end-of-life care arises. You should discuss end-of-life care options together with your medical provider and loved one.
End-of-life Signs and Symptoms
When someone is progressing into a stage where they require end-of-life care, they may exhibit some signs and symptoms. These signs can be both physical and emotional. They can include:
Changes in Temperature of Hands and Feet
Your loved one’s hands, feet and other parts of the body may become cool to the touch. The colour of one’s skin might change and might become mottled. At other times, they may become hot instead. This occurs as one’s heart rate and breathing rate decrease. If your loved one says they feel cold, you can cover them with warm blankets. If they feel hot, you can increase the ventilation in the room and use damp towels to help them feel more comfortable.
Decrease in Amount of Food and Drink Consumed
It is normal for people who are about to pass on to eat and drink less than usual. This happens as the body conserves its energy to prepare for what is going to happen. This is not painful for the person involved. You can give them small sips of water, but do not try to feed them if they have difficulty swallowing.
Experiencing Dreams and Visions
When someone is about to pass away, they may describe visions or dreams they have had. This can include speaking to people they know who have already passed on or visions of the afterlife. The dreams and visions may make your loved one afraid or they can be a source of comfort. These are not hallucinations or reactions to drugs. Do not try to explain away or contradict your loved ones’ experiences if they tell you about them. If they are frightened, you can reassure them that what they see is normal.
Gurgling Sounds When Breathing
Congestion in the chest can cause gurgling sounds inside one’s chest, commonly known as a “death rattle”. The sound comes from saliva that has built up inside the upper airways when it cannot be coughed out or swallowed. It can be distressing to hear, but it is not a sign that one is in pain. When this happens, gently turn their head to the side to drain excess secretions and wipe them away with a damp cloth.
You may see your loved one suddenly making repetitive motions like pulling at their bedsheets. This state is also known as terminal agitation and happens when the person is experiencing a shortage of oxygen. Restlessness can also occur mentally as repetitive tasks show that your loved one may have trouble letting something go. They might have trouble focusing during conversation or make sudden loud noises like moaning. Speak clearly and calmly to them when this happens and try to find ways of soothing them, like playing gentle music or holding their hand.
End-of-life Issues: What to Expect
It is important to have a conversation about death when end-of-life care has become necessary. It is a difficult topic to discuss, but not talking about it can make it harder for you and your family to deal with your loved one passing on when it happens. You should speak to both the affected individual as well as the wider family.
Your family members might become confused or upset when they see the changes happening to your loved one as their body prepares for what is to come. You should calmly explain to them what is going on and be patient with them as they try to adjust to the situation. Try not to get frustrated at your family members if they become agitated, and understand that they may require time to process their emotions and accept what is going on.
In discussions about what is going to happen after your loved one passes on, involve the affected individual in the process and respect your loved one’s preferences wherever possible. You may talk about happy memories you had together to relieve the fear of what will happen.
It is important to discuss legal and financial issues concerning your loved ones before they pass on. One step you and your loved one should take is to organise debts, bills, and insurance. You should also make sure you have a last will and a testament. Financial and legal matters can be hard to focus on with the many emotions that come with end-of-life. Nonetheless, discussing these matters can prevent confusion after your loved one passes on and give you greater peace of mind.
Providing Care and Comfort at End-of-Life
There are different end-of-life care options you can take for your loved one. Each mode of care has its own benefits. Being aware of these different options can help you think of the best possible arrangements for your loved one.
Homage provides palliative care services that allow your loved one to receive care in your home. We will match you with a trained caregiver or nurse who can assist with procedures like administering feeding tubes, injections, and wound care. They can also assist with activities of daily living (ADLs) like helping your loved one get dressed or move between a bed and a chair.
You can also choose to let your loved one receive care from a hospice. Some hospices provide home hospice care where you can receive psychological support through a hotline.
Coping with Bereavement
When the unavoidable comes, it is natural that we will be overwhelmed by many emotions. On top of that, there are many arrangements that have to be made after death as well.
However, there are ways we can cope with this difficult time. Here are three steps you can take to ease the pain of bereavement and find closure.
Give Yourself Time to Grieve
You may feel the pressure to act as if everything is fine. You may feel you have to be strong for your family who is also struggling with this difficult time. But remember that it is always okay to take some time to mourn your loss on your own. Everyone grieves differently, and grieving can come as different emotions, like guilt and anger. It is natural to feel a variety of emotions, and you don’t need to blame yourself for them. Taking time to grieve can help you release pent-up feelings and regain the strength to carry on after your loved one’s passing.
Rally Around Your Friends and Family
Having the support of a community is essential to moving through difficult times. You may feel like withdrawing from friends and family when you are upset during bereavement. Talking to your friends and family about your feelings, however, can help them understand how to best support you. You can also reach out for help on hotlines like Befrienders KL
Remember Happy Memories You Spent with Your Loved One
When your loved one is no longer with you, you may feel overwhelmed by sadness at having lost someone precious to you. It may help to recall the happy times you have spent with your loved ones while they were around. Remembering these moments could help to ease the sadness you feel. Celebrating the legacy that your loved one left on is a positive way to help them be remembered with dignity and to honour the impact they have made.
We hope that this article has helped you understand end-of-life care better and what you can do to find comfort for your loved ones and yourself.
- End-of-Life Signs, Symptoms & Changes – Crossroads. (n.d.). Crossroads Hospice. Retrieved March 25, 2021, from https://www.crossroadshospice.com/hospice-resources/end-of-life-signs/
- Mottled Skin Before Death – What is Mottling Skin. (n.d.). Crossroads Hospice. Retrieved March 29, 2021, from https://www.crossroadshospice.com/hospice-resources/end-of-life-signs/mottled-skin-before-death/
- Palliative Care Australia. (2019, October 23). The Dying Process. Palliative Care. https://palliativecare.org.au/resources/the-dying-process
- Preparing for Death: Steps to Take Before Your End-of-Life. (2020, November 11). Hospice of Holland. https://hollandhospice.org/preparing-for-death/
- Terminal agitation at the end of life. (n.d.). Marie Curie. Retrieved March 26, 2021, from https://www.mariecurie.org.uk/professionals/palliative-care-knowledge-zone/symptom-control/agitation
- van Esch, H.J., Lokker, M.E., Rietjens, J. et al. Understanding relatives’ experience of death rattle. BMC Psychol 8, 62 (2020). https://doi.org/10.1186/s40359-020-00431-3