End-of-Life Care: Questions and Answers

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The time at the end of life is different for each person. Each individual has unique needs for information and support. The patient's and family's questions and concerns about the end of life should be discussed with the health care team as they arise.

The following information can help answer some of the questions that many patients, their family members, and caregivers have about the end of life.

1. How long is the person expected to live?

Elders who are terminal and their family members often want to know how long a person is expected to live. This is a hard question to answer. For example, for a person with cancer, factors such as where the cancer is located and whether the person has other illnesses can affect what will happen. Although doctors may be able to make an estimate based on what they know about the patient, they might be hesitant to do so. Doctors may be concerned about over- or under-estimating the patient's life span. They also might be fearful of instilling false hope or destroying a person's hope.

2. When caring for the patient at home, when should caregivers call professional help?

When caring for a person with a terminal illness at home, there may be times when the caregiver needs assistance from the elder's health care team. A caregiver can contact the elder's doctor or nurse for help in any of the following situations. If the elder:

  • Is in pain that is not relieved by the prescribed dose of pain medication.
  • Shows discomfort, such as grimacing or moaning.
  • Has trouble breathing and seems upset.
  • Is unable to urinate or empty the bowels.
  • Has fallen.
  • Seems depressed or talks about committing suicide.
  • Has difficulty swallowing medication, or refused to take medication.

In addition, the caregiver should call in help anytime he or she is overwhelmed by caring for the elder, is too grieved or afraid to be with the elderly person, or does not know how to handle a situation.

3. What are the signs that death is approaching?

Certain signs and symptoms can help a caregiver 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 the signs and symptoms. In addition, the presence of one or more of these symptoms does not necessarily indicate that the patient is close to death. A member of the patient's health care team can give family members and caregivers more information about what to expect.

  • Drowsiness, increased sleep, and/or unresponsiveness (caused by changes in the patient's metabolism). The caregiver and family members can plan visits and activities for times when the patient is alert. It is important to speak directly to the patient and talk as if the person can hear, even if there is no response. Most patients are still able to hear after they are no longer able to speak. Patients should not be shaken if they do not respond.
  • Confusion about time, place, and/or identity of loved ones; restlessness; visions of people and places that are not present; pulling at bed linens or clothing (caused in part by changes in the patient's metabolism). Gently remind the patient of the time, date, and people who are with them. If the patient is agitated, do not attempt to restrain the patient. Be calm and reassuring. Speaking calmly may help to re-orient the patient.
  • Decreased socialization and withdrawal (caused by decreased oxygen to the brain, decreased blood flow, and mental preparation for dying). Speak to the patient directly. Let the patient know you are there for them. The patient may be aware and able to hear, but unable to respond. Professionals advise that giving the patient permission to "let go" can be helpful.
  • Decreased need for food and fluids, and loss of appetite (caused by the body's need to conserve energy and its decreasing ability to use food and fluids properly). Allow the patient to choose if and when to eat or drink. Ice chips, water, or juice may be refreshing if the patient can swallow. Keep the patient's mouth and lips moist with products such as glycerin swabs and lip balm.
  • Loss of bladder or bowel control (caused by the relaxing of muscles in the pelvic area). Keep the patient as clean, dry, and comfortable as possible. Place disposable pads on the bed beneath the patient and remove them when they become soiled.
  • Darkened urine or decreased amount of urine (caused by slowing of kidney function and/or decreased fluid intake). Caregivers can consult a member of the patient's health care team about the need to insert a catheter to avoid blockage. A member of the health care team can teach the caregiver how to take care of the catheter if one is needed.
  • Skin becomes cool to the touch, particularly the hands and feet; skin may become bluish in color, especially on the underside of the body (caused by decreased circulation to the extremities).
    Blankets can be used to warm the patient. Although the skin may be cool, patients are usually not aware of feeling cold. Caregivers should avoid warming the patient with electric blankets or heating pads, which can cause burns.
  • Rattling or gurgling sounds while breathing, which may be loud; breathing that is irregular and shallow; decreased number of breaths per minute; breathing that alternates between rapid and slow (caused by congestion from decreased fluid consumption, a buildup of waste products in the body, and/or a decrease in circulation to the organs). Breathing may be easier if the patient's body is turned to the side and pillows are placed beneath the head and behind the back. Although labored breathing can sound very distressing to the caregiver, gurgling and rattling sounds do not cause discomfort to the patient. An external source of oxygen may benefit some patients. If the patient is able to swallow, ice chips also may help. In addition, a cool mist humidifier may help make the patient's breathing more comfortable.
  • Turning the head toward a light source (caused by decreasing vision). Leave soft, indirect lights on in the room.
  • Increased difficulty controlling pain (caused by progression of the disease). It is important to provide pain medications as the patient's doctor has prescribed. The caregiver should contact the doctor if the prescribed dose does not seem adequate. With the help of the health care team, caregivers can also explore methods such as massage and relaxation techniques to help with pain.
  • 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.

4. How can caregivers provide emotional comfort to their loved one?

Everyone has different needs, but some emotions are common to most dying patients. These include fear of abandonment and fear of being a burden. They also have concerns about loss of dignity and loss of control. Some ways caregivers can provide comfort are as follows:

  • Keep the person company—talk, watch movies, read, or just be with the person.
  • Allow the person to express fears and concerns about dying, such as leaving family and friends behind. Be prepared to listen.
  • Be willing to reminisce about the person's life.
  • Avoid withholding difficult information. Most patient people prefer to be included in discussions about issues that concern them.
  • Reassure the elder that you will honor advance directives, such as living wills.
  • Ask if there is anything you can do.
  • Respect the person's need for privacy.

5. What are the signs that your loved one 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 the bowel and bladder contents.
  • The patient does not respond to being touched or spoken to.

6. What needs to be done after your loved one has died?

After the patient has passed away, there is no need to hurry with arrangements. Family members and caregivers may wish to sit with the patient, talk, or pray. When the family is ready, the following steps can be taken.

  • Place the body on its back with one pillow under the head. If necessary, caregivers or family members may wish to put the patient's dentures or other artificial parts in place.
  • If the patient is in a hospice program, follow the guidelines provided by the program. A caregiver or family member can request a hospice nurse to verify the patient's death.
  • Contact the appropriate authorities in accordance with local regulations. If the patient has requested not to be resuscitated through a Do-Not-Resuscitate (DNR) order or other mechanism, do not call 911.
  • Contact the patient's doctor and funeral home.
  • When the patient's family is ready, call other family members, friends, and clergy.
  • Provide or obtain emotional support for family members and friends to cope with their loss.

Information gathered from the National Cancer Institute, National Institutes of Health. The National Cancer Institute coordinates the National Cancer Program, which conducts and supports research, training, health information dissemination, and other programs with respect to the cause, diagnosis, prevention, and treatment of cancer, rehabilitation from cancer, and the continuing care of cancer patients and the families of cancer patients.

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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.