Answers to Common Questions About End-of-Life Care

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When a loved one is nearing the end of their life, they have unique care needs and their family members also have their own needs for information and support. Questions and concerns abound during this delicate time and should be discussed with the health care team as they arise. The following information can help answer some of the preliminary questions that many patients, family members and caregivers have about end-of-life care and the dying process.

  1. How long is my loved one expected to live?

    In the case of a terminal illness, patients and their family members often want to know what their life expectancy is. This is a difficult, if not impossible, question to answer. Doctors may be able to make an estimate based on what they know about the patient’s health, but it is just an educated guess. Physicians may be hesitant to even provide an estimate out of fear of instilling false hope or destroying hope. Over- and under-estimates are very common. If you or your loved one is keen on receiving an approximation, remember that things can easily change. Avoid accepting what the doctor says as a definite timeline.
  2. If I am caring for my loved one at home, when should I call for professional help?

    It is likely that there will be times when assistance is needed from your loved one’s health care team. Contact their doctor, nurse or hospice program for help in any of the following situations. If your loved one:
  • is in pain that is not relieved by the prescribed dose of pain medication.
  • shows discomfort, such as grimacing or moaning.
  • has trouble breathing or seems upset.
  • is unable to urinate or empty their bowels.
  • has fallen.
  • seems depressed or talks about committing suicide.
  • has difficulty swallowing medication or refuses to take medication.
    In addition, family members should call for help any time they are feeling overwhelmed. If you are physically exhausted, too grieved or afraid to be with your loved one, or you are unsure how to handle a situation, do not hesitate to contact the care team. That is exactly what they are there to help you with.
  1. What are the signs that death is approaching?

    Certain signs and symptoms can help you anticipate when death is near. They are described below, along with suggestions for managing them. It is important to remember that not every patient experiences each of these symptoms, and that the presence of one or more of these does not necessarily indicate that a person is close to death. A member of your loved one’s health care team can give you more information about what to expect.
  • Drowsiness, increased sleep, and/or unresponsiveness. These symptoms are caused by changes in metabolism. If possible, it is best to plan visits and activities for times when your loved one is alert. It is important to speak directly to them and talk as if they can hear, even if they are not responsive. Most patients are still able to hear even after they can no longer speak. Do not attempt to shake or rouse your loved one if they do not respond.
  • Confusion, restlessness, agitation and/or visions. Your loved one may be confused about the time, their surroundings, and/or the identity of their family members. This can cause them to become restless and anxious. Hallucinations of people who are not present may also occur in some patients. Gently remind them of the time, date and people who are with them. If your loved one becomes agitated, do not attempt to restrain them. Be calm and reassuring. If their anxiety increases, contact their health care team for guidance.
  • Decreased socialization and withdrawal. This can be caused by decreased blood flow and oxygen to the brain and mental preparation for death. Speak to your loved one directly and let them know you are there for them. They may be aware and able to hear but unable to respond. Professionals advise that giving permission for them to “let go” can be helpful.
  • Reduction in or loss of appetite/thirst. At the end of life, the body needs to conserve energy. Certain processes, such as digestion, will slow and eventually stop. Allow your loved one to choose if and when to eat or drink. Ice chips and sips of water or juice may be refreshing if they can swallow. Make sure to keep their mouth and lips moist with products such as glycerin swabs and lip balm.
  • Loss of bladder or bowel control. Keep your loved one as clean, dry and comfortable as possible. Place disposable pads on the bed beneath them and remove them when they become soiled. Their health care team will instruct you on the best products and techniques to use.
  • Darkened urine or decreased urination. This is cause by decreased fluid intake and reduced kidney function. In some cases, a catheter may be appropriate for preventing blockages. A member of your loved one’s health care team can provide instructions on how to take care of the catheter if one is needed.
  • Cool and/or discolored skin. Your loved one’s skin may become bluish in color, especially on the underside of the body and the extremeties. This is caused by decreased circulation. Although their skin may be cool to the touch, they may not actually feel cold. Blankets can be used for warmth, but avoid using electric blankets or heating pads, which can cause burns.
  • Irregular breathing patterns and/or new sounds while breathing. Changes in breathing are very common. Your loved one’s breathing may become shallow, alternate between rapid and slow, and be accompanied by rattling or gurgling sounds. They may be able to breathe easier when lying on their side with pillows placed beneath their head and behind their back. Although labored breathing can sound very distressing, gurgling and rattling sounds do not cause discomfort to the patient. An external source of oxygen may benefit some patients. If your loved one is able to swallow, ice chips may also help. A cool mist humidifier may provide added comfort as well.
  • Changes in vision. Your loved one may turn their head directly toward a light source due to a decrease in eyesight. Try to leave soft, indirect lights on in their room to avoid glare and help them see.
  • Increased difficulty controlling pain. It is important to provide pain medications as your loved one’s doctor has prescribed. Be sure to contact the doctor if the prescribed dosage does not seem effective. The health care team can also suggest other methods for pain management, such as massage and relaxation techniques.
  • Involuntary movements (called myoclonus), changes in heart rate and loss of reflexes in the legs and arms are additional signs that the end of life is near.
  1. How can caregivers provide emotional support to their loved ones?

    Each person has different needs, but some emotions are common during this time. These include fear of abandonment and fear of being a burden. Your loved one may also have concerns about loss of dignity and loss of control. Caregivers can provide comfort in some of the following ways:
  • Keep them company. Talk, watch movies, read aloud or just be with them.
  • Allow them to express their fears and concerns about dying, such as leaving family and friends behind. Be prepared to listen. On the other hand, be respectful if your loved one does not wish to discuss these things or seem talkative. Follow their lead.
  • Be willing to reminisce about their life.
  • Avoid withholding difficult information. Most patients prefer to be included in discussions about issues that concern them.
  • Reassure them that you will honor the arrangements they have made and the preferences they have documented, including advance directives, burial wishes, etc.
  • Ask them if there is anything you can do for them.
  • Respect their need for privacy.
  1. What are the signs that a person has died?
  • There is no breathing or pulse.
  • The eyes do not move or blink, and the pupils are dilated (enlarged). The eyelids may be slightly open.
  • The jaw is relaxed and the mouth is slightly open.
  • The body releases bowel and bladder contents.
  • The patient does not respond to being touched or spoken to.
  1. What needs to be done after my loved one has died?

    After they have passed away, there is no need to hurry with arrangements. You and other family members may wish to sit with them, talk or pray. Take your time. When everyone is ready, the following steps can be taken.
  • Place your loved one on their back with one pillow under their head. You may wish to put their dentures or other artificial parts in place.
  • If your loved one was receiving hospice care, follow the guidelines provided by the program. A hospice nurse will usually arrive to verify the patient’s death and help you through the next steps.
  • Contact the appropriate authorities in accordance with local regulations. If your loved one requested not to be resuscitated through a do-not-resuscitate (DNR) order or similar mechanism, do not call 911.
  • Contact your loved one’s doctor and funeral home.
  • When you and your family are ready, contact other family members, close friends and clergy.

Information gathered from the National Cancer Institute of the National Institutes of Health.

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No Rush
by Judy Faust
It’s the first Spring day in Maine, that really feels like Spring. Emerald grass soggy with rain, slightly overgrown, bends over the cool earth, and I, wearing my pink gardening gloves, am bent over the grass picking up pruned apple branches. I smell the burning fuel of the chainsaw as Phil works around the yard, his greasy old hunting vest, bright as the new daffodils dotting the lawn. A wave of contentment flows through me. Images begin of my mother’s garden in Connecticut. When I arrived last Spring she grabbed my hand and anxiously lead me outside to her garden.
“You have to see the towering cosmos!”
As if I could miss them! Brilliant violet, pink, orange, and red dots
leaning atop long willowy stems waving to us in the blinding sunshine.
“And the broccoli! We’ll have some for supper. Help me pick some parsley.”
I snipped off more than we needed, crunching on an extra mouthful
behind my mother’s back, as if she would mind. How tidy her garden was! Wild flowers grew along side the carefully cultivated pansies and petunias. Wood chip paths curved around vegetables. Flowers chatted with bees, and a handsome wooden gate embraced the happy plot.
Last Fall my mother moved to Florida into an enormous retirement village populated with her relatives and friends. There, other former Jewish refugees live the rest of their well-earned life in comfort, convenience, and luxury. Before Mom left Connecticut she tended her garden for the last time. Lovingly, she gave away her flowery friends to her African American neighbors. She sold the gate, tilled the land preparing it for its next phase. It returned to the bland expression of a blank lawn, part of the apartment complex.
“This will be my last move,” she said on her seventy-seventh birthday that June.
Mom doesn’t have time for gardens now. She dances at the Goldcoast and dines out. She has more friends then she had plants. She thinks of other things. My mother listens to the other retirees. She witnesses aging beauty. Considers more cosmetic surgery. Hears patterns of conversations at the pool about diseases, doctor appointments, grandchildren. She has moved into a fourth floor condominium with mirrors in every room and a view of the landscaped grounds stretching out below like a sunbather. Rushing past the louvered doors, she goes off dancing at the clubhouse or to have dinner with friends.
She called me yesterday. “I changed my will again.”
Oy, I hate the subject. It was about five years ago when she lived in Connecticut that she informed me she bought a plot for me. I would be buried next to her in the old Jewish cemetery. Remember, next to Kinney Park? Near our old house? Would I like that?
Oy. “Does it have an art supply store? A thrift store we can browse in? A bagel shop nearby for lunch?”
When she laughed and answered, yes, I replied, “As you wish. I am honored.” I was also embarrassed that she provided for me what I did not wish to face. “Yes, I’ll be there,” I had told her and I smirked,”No rush.”
Then came another.
“I changed my will again. I don’t like the old Jewish cemetery. It wasn’t what it used to be. The Jewish neighborhood turned into a ghetto of poverty and crime. All the people I once knew have died or moved. It isn’t home anymore.” She said, “Cremation. I sold the plots. I want cremation.”
Oy. I try to picture my dear mother, as ashes. I feel sick. I said, “As you wish, Mom. No rush.”
So now it is Spring, 2000. My fiance’ and I clean the yard, and prepare for spring plantings. We point at an old root cellar and he visualized a Monet pond. I dreamed of a vegetable garden, ripe fruit, new vines.
The phone rings.
My mother says, “I changed the will again.”
Silently I vow to God, Next life, no Gemini mother. Now what?
“Forget cremation. Too messy. What will you do with the ashes? I don’t want to burden you with the ashes.”
I can barely talk. Feels like I swallowed a beefsteak tomato. “What now?” I ask feebly, wondering what alternatives are left.
“I am donating my body to Science.”
What could be worse? She must have heard my heart drop.
A flood of reasons ensue. “I can help others and it costs less. I won’t be a burden...”
“A burden!” I cry loudly, “How could you be a burden?
“But you don’t have the money...”
I don’t know if I am choking on the subject of death, my inferior finances, or her new idea. “But, Mom, it is an honor to love you in life, or death!” I hold back tears, but she spews forth more good reasons. Exhausted, I croaked out, “As you wish. No rush.”
I go back to the broken branches scattered over the fresh spring grass, grasp a handful, and toss the bundle into the wheelbarrow. Phil was sawing off the dead branches of an old apple tree. He looked up at something, and shut off the chainsaw.
“Hey, Judy, do ya want me to leave this child’s swing in the tree?”
“I love swings...But, no. I don’t have time for swings.”
Returning to a young tree that Phil had nourished with ashes from the wood stove, I wept, as I picked up the last broken branch I could find. Tears dribbled into my mouth as I watched him take down the rusty swing. Phil fired up the chainsaw again. I sobbed as the old limbs fell. The whole yard had a new face without the old branches, the old swing. I helped Phil drag away the hallow sections. We studied some chunks, admired the shapes and the lines of age. Some were too interesting to burn for firewood. Perhaps I could use one as a planter, or as a decoration.
Perhaps I could plant a memorial garden for Mom right here when the time has come. Her spirit will be with God and nature, and her body will be, will be...with some vague thing we call Science! I remembered Dennis Camire’s poem about heart transplants, that organs have memories that live in the new hosts.
So someone in my future could crave cosmos in her garden, or have to waltz, or eat Schnitzel, or want to be near someone called Judy? Is donating organs like becoming seeds?
The yard was clear and ready for plans. See what develops. Maybe Mom will call.. No rush.
Good web page - my mom is in the stage of transition, speaks but words come out mumbled, she is had the death rattle in her cough and keeps moaning and moving her hands and is restless. Breaks my heart to see a wonderful person suffering in her last stages of life.
Excellent web site. I lost my husband a couple of years ago, what an amazing journey it was for all of us, especially for Joe. Everything you have shared one can certainly learn from. Great opportunity when reading your articles to listen what has been shared.