End Of Life Q & A
The time leading up to the end-of-life is different for each person. Each individual including the patient, family members and caregivers have unique experiences, emotions and needs. Many questions concerning the end-of-life experience can be discussed with the Hospice clinical team or other health care professionals. They will have insight and understanding that will help to relieve levels of stress and anxiety.
Sometimes, in spite of treatment, a condition or illness cannot be cured and will eventually cause death. In those cases, patients should discuss whether they want aggressive treatment that might prolong life or whether they stop treatment and focus on comfort and quality of life. It is important the family be involved in the discussion, but the ultimate decision is the patient’s and the direction given in the Advance Directives.
End-of-life care, also known as Hospice, focuses on making patients comfortable. They still receive medicines and treatments to control pain and other symptoms. Most individuals, when asked, prefer to pass away in the comfort of their home with hospice services. Others prefer to enter a nursing home or hospital. Either way, hospice services are available, often 100% covered by Medicare or other insurance, to help patients and their families deal with issues surrounding death. Click here to Learn more about Hospice.
When a patient's health care team determines that the illness can no longer be controlled, medical testing and active treatment often stops, but the patient's care continues, often through hospice. Hospice care now focuses on making the patient comfortable. The patient receives medications and treatments to control pain and other symptoms, such as constipation, nausea, and shortness of breath. Some patients, with the help of hospice, often remain at home during this time, while others enter a hospital or other facility. Either way, services are available to help patients and their families with the medical, psychological, and spiritual issues surrounding dying. A hospice often provides such services.
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 hospice 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.
How long is the patient expected to live?
Patients and their family members often want to know how long a person is expected to live. This is a hard question to answer. Factors such as age, physical health, the illness, where cancer is located and whether the patient 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.
Hospice care is available to anyone of any age with a life expectancy of six months or less if the illness or disease runs its normal course. Individuals often wait too long to take advantage of hospice benefits. See hospice eligibility requirements.
When caring for the patient at home, when should the caregiver call for professional help?
When caring for a patient at home, there may be times when the caregiver needs assistance from the patient's hospice and health care team. A caregiver should never feel bad about calling with questions, particularly in the following situations:
- The patient is in pain that is not relieved by the prescribed dose of pain medication;
- The patient shows discomfort, such as grimacing or moaning;
- The patient is having trouble breathing and seems upset;
- The patient is unable to urinate or empty the bowels;
- The patient has fallen;
- The patient is very depressed or talking about committing suicide;
- The caregiver has difficulty giving medication to the patient;
- The caregiver is overwhelmed by caring for the patient, or is too grieved or afraid to be with the patient; or
- At any time the caregiver does not know how to handle a situation.
What are some ways that caregivers can provide emotional comfort to the patient?
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 patients prefer to be included in discussions about issues that concern them.
- Reassure the patient 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.
What are the signs that death is approaching? What can the caregiver do to make the patient comfortable?
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 hospice and 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 hospice health care team about the need to insert a catheter to avoid blockage. A member of the hospice 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 hospice doctor has prescribed. The caregiver should contact the hospice doctor if the prescribed dose does not seem adequate. With the help of the hospice 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.
What are the signs that the patient 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.
What needs to be done after the patient 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.
- Do not contact 911 or ambulance services unless you want the paramedics to perform CPR and other life-sustaining treatment (the law requires paramedics to perform CPR if called, unless patient has a bracelet showing they do not want to be resuscitated).
- 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.
- You must call your local law agency if the loved one has not been cared for by a physician or nurse under a physician's order within the past 30 days. Failure to report such a death is a crime.
- 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.
What are the legal requirements concerning the body, embalming and caskets?
Utah law requires that if a body is not buried or cremated within 24 hours, it must refrigerated or embalmed. Utah Law does not require embalming (replacing the blood in the body with embalming fluid which acts as a preservative) although that is the standard practice. Due to religious, cultural or other reasons, some people object to embalming. Funeral homes may have refrigeration available upon request. Under federal law, funeral homes must provide the price of embalming in its price list and disclose that embalming is not required by law except in certain cases.
While a container is required for cremation or burial, it need not be overly expensive and can be a cardboard casket which costs about $50. A funeral home cannot refuse to use a casket purchased from a national wholesaler or a different source.