Understanding Terminal Illness: How to Recognize the Signs Using Your Senses

Published on March 6, 2024

Updated on March 2, 2024

Facing the reality of a loved one's terminal illness can be a challenging and emotional journey. As a hospice registered nurse case manager, I understand the importance of providing compassionate and clear information to empower patients, caregivers, and families. In this article, we'll explore how you, as a family member, can use your own observations and senses to recognize the signs that your loved one may be in the terminal stage of their illness. Remember, while medical professionals have their tools, your observations and intuition significantly matter.

It is quite common for families to question whether their loved one is truly terminal. I've found it to be exceedingly helpful to the frequency of changes in condition with the family so they can come to their own conclusion. Sometimes it is as simple as asking the family to reflect on the following areas, going back over the last six to twelve months.

Paying Attention to Changes in Physical Appearance

When someone you love is extremely sick, you may notice that they look different than before. Their body is going through a lot of changes as it gets ready to say goodbye. You can use your eyes to see some of these changes and understand what is happening. Here are some things to look for:

Noticeable weight loss: Sometimes, people who are extremely sick do not want to eat much. They may also have trouble swallowing or digesting their food. This can make them lose a lot of weight and become very thin. This is not their fault, and it does not mean they are giving up. It is just the way their body is coping with the illness.

Changes in skin color and texture: You may also notice that your loved one's skin looks different. It may be pale, yellow, or gray. It may feel cold, wet, or dry. These are signs that their blood is not flowing well or that their organs are not working properly. This can make them feel tired, weak, or uncomfortable. You can try to keep them warm, dry, and cozy with blankets, pillows, and gentle touches.

Changes in Energy Levels and Mobility

Another way to understand what your loved one is going through is to pay attention to how they feel and move. When someone is extremely sick, they may not have a lot of energy or strength. They may need more rest and sleep than usual. They may also have trouble moving around or doing things they used to do. Here are some signs of this:

Increased time spent resting or sleeping: You may notice that your loved one is sleeping more than before, or that they are always tired. They may not want to talk or play as much as they used to. This is because their body is working extremely hard to fight the illness, and it needs a lot of rest. You can try to make them comfortable and let them sleep when they need to. You can also spend some quiet time with them, reading, listening to music, or just holding their hand.

Decreased mobility: You may also see that your loved one is having difficulty moving around. They may need help getting out of bed, walking, or going to the bathroom. They may not be able to do some of the things they enjoyed before, like playing games, riding a bike, or going to the park. This is because their muscles and bones are getting weaker, and their balance is getting worse. You can try to help them with their mobility and safety, such as using a wheelchair, a walker, or a cane. You can also find other ways to have fun with them, such as watching a movie, doing a puzzle, or making a craft.

Paying Attention to Breathing Patterns

One more way to understand what your loved one is feeling is to listen to how they breathe. Breathing is especially important for our body, but sometimes it can be hard for people who are extremely sick. Their breathing can change and tell us how their illness is affecting them. Here are some things to listen for:

: You may notice that your loved one is breathing faster or harder than usual, or that they make noises when they breathe. They may also cough a lot or say they feel like they can't get enough air. This is called , and it means that their body is having trouble getting the oxygen it needs. This can make them feel scared, anxious, or uncomfortable. You can try to help them by raising their head, opening a window, or using a fan. You can also talk to them calmly and reassure them that you are there for them.

Irregular breathing: You may also notice that your loved one's breathing is not steady or regular. Sometimes they may breathe extremely fast, and sometimes they may breathe very slowly. Sometimes they may stop breathing for a few seconds, and then start again. This is called irregular breathing, and it means that their body is getting weaker and closer to the end of life. This can be hard to watch, but it does not mean that they are in pain or suffering. You can try to stay with them and hold their hand. You can also tell them that you love them and that it is okay to let go.

Changes in Mental and Emotional State

One more way to understand what your loved one is going through is to pay attention to how they think and feel. When someone is extremely sick, they may not act like themselves. Their mind and emotions can change and affect how they behave. Here are some things to watch for:

Withdrawal and reduced interaction: You may notice that your loved one is not talking or spending time with you or other people as much as they used to. They may seem quiet, sad, or distant. This is because they are saving their energy for the things that matter most to them. It is not because they do not love you or care about you. You can try to respect their wishes and give them space when they need it. You can also let them know that you are always there for them and that you support them.

Changes in cognition: You may also notice that your loved one is not thinking clearly or remembering things well. They may get confused about where they are, who they are, or what day it is. They may say things that do not make sense or forget things that happened. This is because their brain is not working as well as it used to. This can make them feel scared, frustrated, or angry. You can try to help them by reminding them of the facts, showing them pictures, or playing their favorite music. You can also be patient and gentle with them and not argue or correct them.

Listen to Their Words and Expressions

The final way to understand what your loved one is going through is to listen to what they say and how they say it. Even if they do not talk much, they can still tell you a lot with their words and expressions. Here are some things to listen for:

Expressions of pain or : Your loved one may tell you if they are feeling pain or in their body. They may also show it with their face, voice, or body language. They may grimace, groan, or frown. They may hold or rub a part of their body that hurts. They may ask for help or medicine. These are signs that they are suffering and need your care. You can try to help them by asking them where and how much it hurts, giving them pain relief, or calling their doctor. You can also comfort them by holding their hand, giving them a hug, or saying kind words.

Final wishes: Your loved one may also tell you what they want or need in their last days. They may have some things they want to do, see, or say before they die. They may have some people they want to visit or talk to. They may have some preferences about their care, such as where they want to be, who they want to be with, or what they want to wear. These are their final wishes, and they show that they are aware of their situation and want to make the most of their time. You can try to help them by listening to their wishes, respecting their choices, and doing your best to fulfill them. You can also support them by telling them that you are proud of them, that you are grateful for them, and that you will always remember them.

Conclusion: Trusting Your Intuition and Observations

While medical professionals have the expertise to diagnose and monitor terminal illnesses, your observations as a family member are invaluable. By paying attention to changes in physical appearance, energy levels, breathing patterns, mental state, and communication, you can gather meaningful information that aligns with medical assessments. Your love and care, coupled with your insights, can contribute to a more compassionate and informed end-of-life journey for your loved one.


Interviewing and Observation as part of the assessment

Breathing Patterns Before End of Life: Critical Clues for the Last Hours!

The importance of caregiver journaling for the patient and family

Educating families on reporting changes of condition

Understanding Terminal Illness, Hospice Care, and End-of-Life Planning

Providing Comfort During the Last Days of Life with Barbara Karnes RN (YouTube Video)

Preparing the patient, family, and caregivers for a “Good Death”

Velocity of Changes in Condition as an Indicator of Approaching Death (often helpful to answer how soon? or when?)

The Dying Process and the End of Life

The Last Hours of Life

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