Comfort home care and end of life care are terms sometimes used interchangeably to describe medical care and support provided before someone dies. In this post we review end of life signs and symptoms in elderly and share tips on providing comfort care and end of life care at home.
What is Comfort Care? What is End of Life Care?
End of life care, or comfort care, is providing the patient with care and support at end of life.
Their medication and any treatments are to relieve symptoms so they feel better.
The goal of comfort care is to help enrich the quality of life, minimize suffering, and respect end-of-life wishes.
The end of life care could be days, weeks, or months before death.
What to Expect
End of Life Signs and End of Life Symptoms in Elderly
End of life usually means those expected to die within the next 12 months or so.
For some, it could be hours, days, or months, while the end of life span is longer for others.
Everyone’s end of life and death experiences are unique.
Some people slowly deteriorate with a chronic illness, while others die suddenly. End of life signs and end of life symptoms in elderly also vary.
Some may remain mentally alert but physically weak, while others stay strong but suffer severe cognitive losses.
Comfort care generally focuses on mental and emotional needs, maximizing physical comfort, and ensuring spiritual needs are met.
What Are Some End of Life Signs and End of Life Symptoms?
You may notice various changes in your loved one.
Below are 15 common end of life signs and symptoms.
Further below we will discuss how to provide comfort care for each.
Offering comfort home care can provide relief for uncomfortable end of life symptoms in elderly.
Common Signs of End of Life include:
- Increasing fatigue
- Decreased appetite or progressive weight loss
- Disorientation or confusion about time, place, identity of loved ones
- Changes in the level of consciousness, becoming unresponsive
- Incontinence (loss of bladder or bowel control)
- Digestive problems
- Breathing problems, possibly noisy respiratory secretions
- Skin Irritation
- Cold or mottled skin
- Temperature sensitivity to hot or cold
- Terminal restlessness
- Emotional discomfort
1. Comfort Home Care for Fatigue
Some tips for providing comfort home care to patients with fatigue include:
- Balancing rest and activity is one step in helping manage fatigue.
- Stop and rest when you are feeling tired.
- Comfort home care includes planning so that you are active when you have the most energy.
- When you are active, stay safe. For example, if walking is difficult, use a cane, walker, or wheelchair.
- Monitor what medicines may be making you tired. If one of your prescriptions is making you tired, talk to your health care provider. Your provider may change your medication or change the time it should be taken. A medication side effect tracker may help identify any side effects of your prescription drugs.
- Distractions may help ease fatigue, for example: visiting with family, sitting outside, listening to music, or an audiobook.
- If helpful, comfort home care includes utilizing durable medical equipment like using a bedside commode instead of numerous walks to the bathroom.
- Save your energy for those people and things that are most important.
2. Comfort Home Care for Pain
The goal with comfort care is to keep your loved one as comfortable and as pain-free as possible.
Pain can make people irritable, tense, sleep poorly, and decrease socialization, appetite, or concentration.
Pain can be managed, so comfort home care includes monitoring pain and asking for help to control it.
Discuss Pain with the Provider
If pain is not being controlled successfully, don’t hesitate to ask your provider to be referred to a pain specialist.
Pain affects people differently, but it is usually controllable.
Be descriptive when reporting pain, for example:
- Where is the pain?
- What does the pain feel like? For example, throbbing, sharp, dull?
- How long does the pain last? Is it continuous or intermittent pain?
- When did the pain start? Is it the same now or different than when it began?
- What makes the pain better, and what makes the pain worse?
When you have pain for a while, it is challenging to remember your pain’s progression since your last medical appointment.
A pain diary can be helpful with end of life care.
Most providers ask what level your pain is on a scale from 0 to 10, with 10 being the worse pain you can imagine.
Don’t just tell them how you feel during those few minutes at the appointment, but review the pain diary to know how you frequently feel throughout the days.
Signs and Symptoms a Person is in Pain
If your loved one cannot communicate, these are some end of life symptoms in elderly to watch for that show they may be in discomfort or pain:
- Noisy breathing, including things like labored, harsh, loud, or fast breathing
- Making sounds, for example, moaning, groaning, moaning, or somehow expressing hurt
- Facial expressions including things like looking tense, sad, frightened, or crying.
- Body movement and language can tell you a lot. Look for things like signs of anxiety or tension, clenched fists, restlessness, or pulling away that might indicate something hurts or is sensitive.
Identifying these things and giving pain medicine as needed is part of comfort home care and will help you keep your loved one as comfortable as possible.
3. Comfort Care for Loss of Appetite
The body may go through changes at the end of life that may decrease appetite and further weight loss.
Other things that may reduce appetite include:
- side effects from medications
- changes in smell or taste,
- dry mouth, which could be a side effect of medications
- diarrhea or constipation
- nausea or stomach pain
- difficulty swallowing
- pain, stress, or anxiety
Depending on your loved one’s medical conditions and medications, it may not be uncommon to see a decreased appetite.
Talk to the medical team to see if anything can be done to increase the appetite and whether it will increase the quality of their end of life care.
For example, comfort home care options may include:
- Some medications can help with nausea or stimulate the appetite.
- The health care provider may have tips on the best foods to eat, nutritious ones, and calorie-dense.
- Supplemental shakes and drinks may help with nutrition.
- Some people find it easier to eat small frequent meals or tend to eat more if they eat while others are present.
- Loss of appetite may be part of the dying process because the body is shutting down; it does not mean the patient is suffering.
4. Comfort Care for Disorientation or End of Life Confusion
Your loved one may get confused about who you and other family members are, and they could also get confused about time and place.
- Tell them who you are before you start talking to them.
- Speak softly and truthfully. For example, before giving them pain medicine tell them it is time to take their medication so they are won’t be in pain.
5. Comfort Home Care for Drowsiness
You may notice your loved one sleeping more and they may be difficult to arouse.
This is a common change noticed when providing end of life care.
Sitting with your loved one, gently holding their hand, talking to them softly, playing their favorite music (in a low volume), and keeping the atmosphere calm may bring them comfort.
6. Comfort Care for Changes in the Level of Consciousness
Your loved one might go in and out of consciousness, and even become unresponsive.
It has been thought that hearing is the last sense to go when someone is dying, and research shows that some may be able to hear even when they are unresponsive.
Being present, in person or by phone, can be meaningful and bring comfort to your loved one.
7. Comfort Care for Incontinence (Loss of Bladder or Bowel Control)
There can be a variety of causes of incontinence, and the severity of the incontinence care vary.
Here are some things you can do to manage incontinence in end of life care:
- Talk to your physician for management insight.
- Some helpful items may include a bedside commode, bedpan, adult diapers or urinal.
- Keep your loved one as clean and dry as possible.
- Barrier creams can help protect the skin.
- You can place washable or disposable pads on the bed underneath your loved one and then remove them after they become soiled.
8. Comfort Care for Digestive Problems
Your loved one may experience nausea, vomiting, end of life diarrhea or constipation.
Talk to the provider or the health care team because the causes of these issues and the treatment may vary.
For example, these issues may be a side effect of some pain or other medicines.
Some medicines can help manage nausea, vomiting, loose bowels and constipation.
9. Comfort Home Care for Breathing Problems
Shortness of breath or feeling that breathing is difficult is not uncommon toward end of life.
Some have other breathing issues, like irregular breathing, labored breathing end of life, or shallow breathing.
Sometimes elderly have noisy breathing when they are near death; this is called a death rattle.
The rattle sound is caused by fluids collecting in the back of the throat.
Not all noisy breathing is a death rattle.
To help with end of life breathing problems with end of life care:
- Try raising the head of the bed (or place pillows beneath their head to raise it)
- You can turn your loved one’s body to the side
- Try putting on a fan
- Turn on a cool-mist humidifier
- Open a window
- You can talk to the doctor or health care team to see if anything else, like medicine, can help with breathing problems.
10. Comfort Home Care for Skin Irritation
Skin irritation or breakdown can be uncomfortable, and can even lead to infection and other problems.
The elderly are more at risk for skin breakdown because our skin becomes drier and more fragile as we age.
To help with these end of life skin changes:
- Cleaning skin carefully and gently drying can help keep the skin intact.
- Applying alcohol-free lotion can be soothing.
- If the mouth seems dry, you can wipe the inside of the mouth with a cloth or mouth swab. Lip balm may help.
- Sitting up or lying in the same position for a prolonged period can lead to painful bedsores, sometimes also called pressure ulcers. This is due to the constant pressure on that part of the body’s skin. At first, you may see the skin getting discolored or darker in one area.
- Watch carefully for skin changes.
- If you start noticing the skin getting discolored, make sure you are turning and repositioning your loved one, so the spots do not turn into sores.
- Common areas of bedsores include the heels, lower back, hips, and back of the head.
- Turning your loved one from side to back and then to the other side, every few hours will help prevent pressure sores.
- You can try putting a foam pad or pillow under a sensitive area like a heel or elbow to raise it up off the bed, thereby reducing the pressure.
- Ask your provider or health care team for other ideas, for example, if a special mattress or cushion may help.
11. Comfort Care for Cold or Mottled Skin End of Life
If blood pressure slowly drops and blood flow slows, your loved one’s skin may begin to feel cold, and it may look mottled.
Mottled skin means it has a purple or red marbled appearance, frequently first seen in the feet.
To help with these end of life skin changes:
• Warm your loved one with blankets to keep them comfortable
• Do not use electric heated blankets or heating pads because they can cause burns.
12. Comfort Home Care for Temperature Sensitivity (Too Hot or Cold)
Your elderly one may not be able to let you know that they are too cold or too hot.
To help temperature sensitive with end of life care:
- Watch what they do because they may be sensitive to temperature and giving you clues.
- For example, your loved one may keep trying to remove a blanket. If so, you may want to help them cool off a little by taking some blankets off or applying a cool cloth to their forehead.
- On the other hand, if you see your loved one shivering, trying to pull up the covers, or hunching their shoulders, they may be cold. You can add another blanket, raise the heat some, or check to make sure there is no window draft nearby.
13. Comfort Care for Anxiety End of Life
Anxiety is a common end of life issue people nearing death may experience.
Some people may experience some mild anxiety end of life, while others may experience severe anxiety with panic attacks.
If your loved one starts showing signs of anxiety, try to maintain a calm environment.
You can try distraction, like talking about other things.
Because some anxiety at the end of life is normal, you will want to validate their feelings.
Mindful breathing, inhaling, and allowing exhalation (breathing out) to be longer than inhalation, can help one relax.
Don’t hesitate to contact the provider or health care team and ask for instructions on how to help with your loved one’s anxiety.
The doctor may prescribe medications to treat the anxiety which can be helpful for end of life care.
14. Comfort Care for Terminal Restlessness
Terminal restlessness is also known as terminal delirium, and it is also sometimes called terminal agitation.
It is a syndrome that can happen near the end of life.
Patients experiencing terminal restlessness may show signs of lethargy, cognitive decline, or possibly emotional or physical restlessness.
Some may show high levels of agitation with outbursts, making this time much more challenging for the family.
It can be unpredictable because there is no set course.
It affects people differently.
It usually appears suddenly, either very lethargic type behavior or the opposite- aggressive behavior, which is generally the most difficult to watch.
Terminal restlessness stems from physiological changes within the body, it is not genuine hostility or anger.
Terminal restlessness can pose challenges in end of life care because there are many possible causes making it difficult to treat.
Common causes of terminal restlessness may include:
- Medications, possibly some that are used to comfort patients at the end of life symptoms.
- Pain, which sometimes can be challenging to manage.
- Cancer treatments, for example, chemotherapy or steroids.
- Medical conditions, such as infections, anemia, or dehydration.
- Organ failure. For example, kidney or liver failure may lead to electrolyte imbalances that impact the brain.
- Emotions such as anxiety or fear because the patient knows they are dying.
If your loved one is showing signs of terminal restlessness, it is a good idea to contact their physician or health care team so they can explore treatment options.
Sometimes it can be treated, but other times it is challenging and hard to find the cause.
Most importantly, remember that terminal restlessness is not a reflection on how your loved one feels about you.
Instead, it is a medical condition that sometimes occurs at the end of life.
That may not make it easier to watch, so please take care of yourself and seek support in this difficult time.
15. Emotional Support at the End of Life
End of life care includes emotional support.
Just being there with your loved one can be soothing and meaningful to them.
The focus of comfort care when someone is dying is on relieving discomfort and improving the quality of life.
Emotional comfort care can be calming and peaceful.
Below are some tips on how you can provide your loved one with emotional care at the end of life.
If you would like to download and print a free copy of information on providing emotional comfort, click on Tips for Providing Emotional Comfort.
End of Life Care – Providing Emotional Comfort Care
- Be present and keep your loved one company. You can sit quietly and hold their hand, talk to them (even if they cannot speak), read to them, or watch television together.
- Listen to your loved one express their thoughts and feelings, even if what they have to say is difficult to hear. For example, they may be afraid of dying or be sad to leave family members behind. Allowing them to express their fears may help them come to terms with what is happening.
- If your loved one can comprehend information, keep them included in conversations about their condition.
- Share memories with your loved one. Encourage them to talk about themselves, their past, and the things they have enjoyed in life. Some find emotional comfort in reminiscing about good times. Allowing them to reminisce is another way some people gain perspective of the life they lived and the process of dying.
- Reassure your loved one that you understand what is important to them and you will honor their wishes, for example, their advanced directives, even if you disagree with them.
- Bring a pet to visit your loved one. Studies show petting a dog or cat can initiate relaxation and ease anxiety.
- Respect your loved one’s privacy, as most want to die comfortably and with dignity.
- Don’t burden your loved one with your feelings of sadness or fear. Instead, speak to someone else about how you feel.
Spiritual Support – Providing Spiritual Care at the End of Life
Spiritual support may be helpful for some people.
It may help them cope better with thoughts of dying and provide peace and comfort.
Spiritual support may enable them to have a more hopeful outlook.
It can reduce fear about dying and improve their quality of life.
It can also help them seek answers to spiritual questions they may have.
Spiritual support should match your loved one’s beliefs.
People have different beliefs about death, the afterlife, and other spiritual topics.
Spiritual support is most effective if you find a support strategy that matches your loved one’s ideas and beliefs.
Think about what type of support may benefit your loved one. Consider their faith, religion, and spiritual practices.
For example, they may appreciate scriptures, prayer, rituals (like anointing or last rites), or spiritual music.
Your loved one may want to connect with an estranged family member or friend, maybe to find closure.
If they would like a visit from a spiritual leader, try to find a chaplain or spiritual advisor that meets your loved one’s needs.
If you are receiving hospice care or palliative care, you can contact the care team about available options.
What Should I Say?
Comfort home care includes having open communication with the dying person.
In addition, explore any advance directives they have outlining their preferences of end-of-life care. If there is uncertainty about their prognosis, let them know and explain how their care will be managed.
Be honest with them, and avoid false optimism.
Comfort home care includes providing the dying person with:
- Accurate information about the condition and prognosis (unless they do not want to be informed)
- Allow them to ask questions about their condition and the care they are receiving
- Encourage discussions that allow them to open up about any concerns, fear, or anxiety
- Encourage conversations with members of their care team or someone who could provide spiritual support.
Advance care planning can be a difficult topic to understand and to discuss.
Read more here about advance care planning and tips to discuss these sensitive topics with your loved one.
Providing comfort care for someone who is dying is physically and emotionally challenging, especially when you are seeing end of life signs and end of life symptoms.
It is helpful to recognize the potential harms of stress on your body and how stress can be dealt with.
For more information about stress and how it impacts your body, read our post What is Stress?
Self-care is critical for caregivers, especially while providing comfort care for someone you love.
Read more in our post Self-Care Tips For Caregivers.
Additional Information about End of Life Care
For a comprehensive guide on end of life care, including end of life care decisions, types of care like hospice and palliative care, what happens at end of life and more, please read our blog post: End of Life Care: The Complete Guide
Some Helpful Resources:
There may be resources available in your community that could help you or your loved one.
For example, meal delivery programs, respite programs, or visiting nurses.
For an in-depth list of community resources, please read our blog post What Are Community Resources and How to Find Them
Below are a few resources you may find helpful:
ACL’s Eldercare Locator
The Eldercare Locator is a great tool. The U.S. Administration on Aging provides the locator, which can help you locate services for older adults and their families. Visit the Eldercare Locator or call 800-677-1116.