Tools for the Last Chapter of Life
Where to Die?
When asked where they want to die, 95% of people will want to die at home. In reality, most people die in the hospital. There are a number of reasons for a person to die in the hospital or a long-term care facility.:
 | Many deaths are unexpected. |
| Families may not be prepared to be caregivers. |
| Finances and access to care may be a problem. |
| Some people are alone without family nearby. |
In Fairbanks there are a number of options: home, home with hospice and/or home health care support, hospital, assisted living homes, Pioneer Home, and Denali Center. It is important to make sure family members agree about where the person wants to die. Everyone must be clear on how to handle unexpected changes and honoring the person’s wishes. Do not wait for a crisis. This is especially important when wanting to avoid hospitalization.
The goal is usually to stay home as long as possible. This can evolve into dying at home and knowing the hospital is always there! The hospital is an important safety net. It can provide a temporary stay to manage a problem. Some may feel better with a plan for a long-term care facility, especially when living alone or the family comfort. Often a person may chose to die at home and then chooses to go the hospital or to long-term care. Transfers between home, hospital, and long-term care can happen. Whatever feels right is right.
Do Not Resuscitate Orders
Alaska has two documents that help the person when they want to die at home and one document for the person in the hospital or long-term care facility. These forms provide the opportunity of a death with peace and dignity without medical or legal interference.
Comfort One Program
The Comfort One Program is for individuals who are terminally ill and who do not wish to have life saving measures performed when they have respiratory or cardiac arrest. The person must have a terminal condition and complete a simple form with a physician enrolled in the program. The person gets a copy of the standardized form, a wallet card, and bracelet (costs $20) that serves to alert health care providers that the person has a valid Do Not Resuscitate order and CPR (cardiopulmonary resuscitation) should not be started and stopped when identification is discovered. To learn more about this program click Comfrot One Program.
Expected Home Death Report
The physician also completes An Expected Home Death Report and sends it to the Alaska State Troopers. This alerts the AST that the physician knows that death is imminent and they will sign the death certificate. This prevents the death from becoming a coroner case requiring an autopsy and inquest. This form allows the AST to release the body directly to a funeral home. Click to view a blank death certificate.
Do Not Resuscitate Order
The physician completes a Do Not Resuscitate (DNR) order during a hospitalization or admission to a long-term care facility. The doctor re-writes the orders for each stay. This reassures the dying person that when the heart stops that cardiopulmonary resuscitation with electric shock and medication are not part of the treatment plan. Comfort measures and pain management will continue as part of the plan.
Signs of Approaching Death
Certain signs and symptoms may appear as the body prepares itself for the final stage of life. Not all dying persons may have all of these symptoms:
Decreased appetite and a decrease in need for food and drink. The body will naturally begin to save energy, which it uses to eat or drink. The person may need nutritional supplements. Do not try to force food or drink, or try to use guilt to manipulate them into eating or drinking something. The body tells the person when it no longer desires or can tolerate food or liquids. The loss of appetite is a signal that your loved one’s body is getting ready to die. Dehydration is a natural analgesic when death is imminent.
Increased amount of time sleeping and difficult to arouse at times. This is a normal change due to changes in the body metabolism. Plan to spend more time with the person when they are alert. Being with them is more important than doing for them.
The person may have some confusion about time, place, and identity of the people surrounding them. This includes close family and friends. This is a normal result of metabolic changes. Identify yourself by name. Speak softly, clearly, and truthfully when communicating.
Decrease in clarity of hearing and vision as death comes nearer. Indirect lighting in the room may help. Never assume that the patient cannot hear as hearing is the last of the five senses to be lost.
Restlessness and repetitive motions such as pulling at bed linen or clothing happens often and is due to the decrease in circulation to the brain and metabolic changes. Do not be alarmed or try to restrain such motions. To have a calming effect, speak quietly, lightly massage the hand/forehead, read to the person, or play music the person enjoys.
Loss of control of bodily functions of the bladder or bowel occurs as muscles begin to relax. Ask the nurse about protective measures that can keep the person clean and comfortable.
Decrease in urine production occurs and the urine may become tea-colored. This is from decreased fluid intake and circulation through the kidneys. A nurse can determine if there is a need for a catheter.
Noisy breathing with gurgling sounds coming from the chest. Sometimes these sounds become very loud and can be distressing to hear for family and friends although the person is usually unaware of it. It is probably harder to watch than it is on your loved one. Suctioning is usually ineffective and can cause the person discomfort. Elevating the head of the bed and turning to their side may help.
Changes in breathing patterns occur due to a decrease in circulation and an increase of body waste products. A few of the different breathing patterns are: (1) breathing irregularly with shallow respirations, or periods of no breaths for 5-30 seconds, followed by a deep breath, (2) rapid shallow panting type breathing, and (3) moaning-like sounds on breathing out, which may sound like distress, but is just the sound of air passing over relaxed vocal cords. Elevating the head and turning them on their side may help relieve some of these different breathing patterns. If the person indicates they are having trouble breathing, notify the nurse.
Change in skin temperature and color occurs with arms and legs may become cold, hot or discolored. The underside of the body may change to mottled as circulation decreases. This is a normal indication that the circulation is supporting the most vital organs. Irregular temperatures can be the result of the brain sending unclear messages. Keep the person warm if they appear cold. If the person continually removes the covers, then allow them just a light sheet.
Signs of Death
The signs of death are:
| No breathing - the chest does not move. |
| No heartbeat - there is no pulse in the wrist or neck. |
| The person cannot be aroused. |
| Eyelids may be slightly open with the eyes in a fixed stare. |
| The mouth may fall open as the jaw relaxes. |
| Sometimes there is a release of bowel or bladder contents as the body relaxes. |
There are a number of people and agencies to contact and things to do following a death. A nurse from the physician’s office or from home health care will provide a document outlining the symptoms of approaching death. They will provide a list of persons to contact and exact steps to take following the death. DO NOT CALL 911!
Home Care
Fairbanks Memorial Hospital Home Health Care. Anyone can call a referral to FMH Home Health Care by calling 458-5410. The nurse will obtain the physician’s approval and inquire about insurance coverage. The criteria for eligibility are: homebound and skilled care needs. Many insurance companies will cover a one-time home health assessment by a physical therapist, Denali Center, home health care, or hospice (no charge for this one).
Job Ready 456-4524. Provides “personal care attendants” for the chronically ill. They do not have nurses. Medicaid eligible only.
Fairbanks Resource Agency Senior Services Respite 451-0389. Respite means “relief.” The person must be 62 years old or older. The fee is on a sliding scale according to income. A caregiver gives relief to a family member up to 40 hours a month. They have good training and can do anything done by a family member.
Private Hire. There are lists available of private hire caregivers. These lists are available through Patient Quality Resources at FMH (458-5400), Access Alaska (479-7940) or Fairbanks Resource Agency (451-0389).
Hospice of the Tanana Valley 474-0311. This organization provides volunteers to help in the home. The needs of the dying person match the services the volunteer can provide.
Medical Equipment and Supplies
These agencies can provide home adaptations device, equipment and care supplies. They must have a prescription from the physician to bill insurance. They will check out to see what insurance pays. Often, a “charge card” for a month is setup so someone can pick up supplies and charged to the insurance; you need a new card each month.
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FMH Home Medical Equipment >> 458-5421 | ||||||||
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Interior Medical Supply >> 457-8486 | ||||||||
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Geneva Woods >> 486-2288 | ||||||||
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Apria Home Health Care >> 458-8912 | ||||||||
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Loan Closets: Many organizations loan equipment or supplies at no cost for those without insurance.
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Living Options for the Last Chapter of Life
Long-term Care Facility. Denali Center 458-5100. There are Social Workers to answer your questions about admission. Skilled or hospice care is provided. There is a waiting list for the hospice room.
Assisted Living Homes
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Pioneer Home 456-4372. There is an admission application with a part for the person and for the physician. The waiting list is about 4 years long. When a person nears the top, they are invited to take a tour 30 days before admission after which they have 30 days to decide on taking the opening. If they not to enter the home, they move to the bottom of the list. |
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Private Assisted Living Homes. Fairbanks Resource Agency is aware of openings 456-8901 or 451-0389. |
Fairbanks Memorial Hospital 452-8181. A hospital stay may be temporary to manage symptoms. This could be for intravenous antibiotics, fluid hydration, or pain management. It is important that wishes for end-of-life care are clear to the family and the physicians. Ask about the hospital’s “comfort care” protocol. Talk to the discharge planners, social worker, and hospital chaplain. If there will be a need for a long term care facility, ask the social workers to pre-authorize your stay through your insurance. A private room is often available for those with a terminal illness. The nurses can teach the care that may be required at home.
Miscellaneous Services for Assistance.
Alaska Legal Services for help with financial assistance, Miller Trusts >> 452-5181 and web page is www.alsc-law.org/publications
American Cancer Society >> 474-4555
Interior AIDS Association >> 45-4222
Lifeline 458-5997 This “necklace” has a button to push in case of falls or an emergency when the person is alone. The emergency room receives a signal through the button and telephone. They notify one of the three “responders” on the list provided that the person needs assistance.
