End-Of-LIfe Decisions

END-OF-LIFE

DECISIONS

HONORING THE WISHES OF A PERSON

WITH ALZHEIMER’S DISEASE

PREPARING FOR THE

END OF LIFE

When a person with late-stage Alzheimer’s

— a degenerative brain disease — nears

the end of life and is no longer able to make

his or her own decisions, families must make

choices on the person’s behalf.

Ideally, the person with dementia has put

in place advance directives that specify his

or her wishes. Without such directives, or

if certain issues have not been addressed,

families must make choices based on what

they believe the person would want. All

end-of-life decisions should respect the

person’s values and wishes while maintaining

his or her comfort and dignity.

The Alzheimer’s Association® can help you

prepare for making end-of-life decisions,

such as:

» Advocating for care that is based on

the expressed wishes of the person

with dementia.

» Refusing, starting, limiting or ending

medical treatments.

» Facilitating care that focuses on comfort.

» Arranging for a brain autopsy.

CONTENTS

1. Honoring the person’s wishes ................ p.2

2. Understanding treatment options ....... p.4

3. Making informed decisions ....................... p.7

4. Resolving family conflicts ......................... p.10

5. Arranging for a brain autopsy ................. p.11

6. Terms you should know .............................. p.12

HONORING THE

PERSON’S WISHES

A person with dementia has the legal right to

limit, refuse or stop medical treatments. These

wishes are usually expressed through advance

directives — legal papers that specify the type

of medical care a person wants to receive once

he or she no longer has capacity to make such

decisions, and who should be in charge of making

those decisions.

Advance directives should be made when the

person with dementia still has legal capacity —

the level of judgment and decision-making ability

needed to sign official documents or to make

medical and financial decisions. These documents

should be completed as soon as possible after a

diagnosis of dementia.

If advance directives are not in place, the family

must be prepared to make decisions consistent

with what they believe the person would have

wanted, while acting in that person’s best

interest. Laws may vary by state, but a spouse

or adult child may have the right to make the

decision to stop medical treatments in the

absence of an advance directive.

ADVANCE DIRECTIVES

Make sure to use the advance directives

forms that are recognized in the state where

care is, or will be, provided. The Association

can help you locate these forms and provide

more information about making legal plans.

TYPES OF ADVANCE DIRECTIVES

Living will

A living will is a set of written instructions that

provides speciﬁc preferences about the kind of

medical treatment a person would or would not

want to have. It does not designate someone to

make medical decisions on the person’s behalf,

but rather allows the person to communicate

wishes about future care.

Durable power of attorney for health care

A durable power of attorney for health care

allows a person to choose a partner, spouse,

family member or trusted friend to make

decisions about care and treatment when he or

she is no longer able.

ENSURE ADVANCE DIRECTIVES

ARE FOLLOWED

1. Give copies of the forms to all those

involved in decisions, including:

» Family members.

» Doctors.

» Other health care providers.

Have advance directives placed in the individual’s

medical record. If the person is transferred to a

new setting, provide copies to those newly

involved in caregiving.

2. Discuss advance directives.

Family members should understand, respect

and abide by the person’s wishes. Discuss these

wishes to work out any disagreements and help

prevent future conﬂict or crisis decision making.

Advance directives should also be discussed

with doctors and other health care providers to

ensure they’re aware of their patient’s wishes.

If a conflict develops between family members,

residential care facilities and hospitals often

offer social services that can help. You may also

consider mediation services as a way to reach

consensus. Single people or those in a domestic

partnership should designate the appropriate

individual to carry out their advance directives if

it is not a family member.

3. Stay involved in medical decisions.

Work with the health care team to create

and follow a care plan based on the advance

directives. Make sure you are kept informed of

any changes in your family member’s condition

that may prompt the need for new decisions.

UNDERSTANDING

TREATMENT OPTIONS

Be aware of the range of medical care available

when making decisions to use, withdraw, limit or

refuse treatment for the person with Alzheimer’s.

Deciding on treatment options in the late stage

of the disease can be one of the most difficult

decisions that families face.

Arming yourself with information and discussing

options with your care team can be helpful. It’s

also important to ask the medical team questions

and make sure you understand which treatments

are suggested and why they are appropriate.

AGGRESSIVE MEDICAL CARE

Individuals who have completed advance

directives may have addressed the use of

aggressive medical care — measures taken to

keep a person alive.

Respirators

If a person with Alzheimer’s is no longer able to

breathe independently, a respirator may be used

to assist with breathing. While a respirator can

help keep a person alive, it may also cause the

person’s body to undergo unnecessary stress and

can cause greater discomfort.

Feeding tubes

Feeding tubes are sometimes used if a person

has a hard time eating or swallowing, which is

common in late-stage Alzheimer’s. However,

there is no proof that tube feeding has significant

benefits or extends life.

Tube feeding can also result in:

» Infections.

» Need for physical restraints (the person may

try to pull out the tube, causing injury).

There are other ways to feed a person with

late-stage Alzheimer’s, such as by careful hand

feeding. For someone who can no longer

swallow, an approach focusing on comfort in

dying may be most appropriate.

IV hydration

IV hydration — liquid given to a person through

a needle in a vein — may temporarily provide

fluid when a person can no longer drink, but

cannot supply the nutrition needed to stay alive.

Increased hydration may also make the person

uncomfortable because it can cause difficulty

with breathing.

Lack of hydration is a normal part of the dying

process and allows a more comfortable death

over a period of days. Using IV hydration can

draw out dying for weeks and physically burden

the person. If artificial nutrition and hydration

are used, families will eventually need to decide if

or when these treatments should be stopped.

CPR

A family may have to decide whether medical

professionals should try to revive a person with

cardiopulmonary resuscitation (CPR). CPR is used

to restore function when a person’s heart and/or

breathing stops. It may include mouth-to-mouth

breathing, or pressing on the chest to mimic

heart function and cause blood to circulate.

Consider that CPR:

» May be painful and traumatic.

» May leave the person in worse condition.

» May not prolong life.

» Is not recommended by many experts when a

person is terminally ill.

The family can ask the doctor to sign a

do-not-resuscitate (DNR) order and place it in

the person’s medical chart. A DNR order states

that no attempts will be made to revive the

person.

Palliative care

Palliative care uses a multidisciplinary approach

to treat pain and improve quality of life by

addressing a person’s physical, mental, social and

spiritual well-being. It focuses on providing relief

from the symptoms and stress of a serious illness.

People may be treated with palliative care at any

stage of a disease or condition, whether terminal

or not.

Hospice care

Hospice programs provide care to those in the

last stages of terminal illness, while also offering

support services to families. Instead of seeking a

cure or trying to prolong life, hospice care focuses

on dignity and quality of remaining life.

A hospice team includes a doctor, nurse, social

worker, nurse’s aide, clergy and trained volunteers.

They work together to address the physical,

emotional and spiritual care of the person as well

as the family. Care can be provided at home, or in

a hospital or residential care facility.

For Medicare to cover hospice care, a doctor must

estimate that the person has six or fewer months

to live. Hospice benefits may be extended if the

person lives longer than expected. If the person

has Medicaid or other insurance, it is best to

check with the insurance provider about coverage.

MAKING INFORMED

DECISIONS

When advance directives are not in place or do

not address every issue of end-of-life care, it can

be difficult for families to make decisions. Below

are some tips to help you through the process.

Focus on the person’s wishes

Compare any recommended treatments or

actions with the person’s wishes for care, or with

what you believe he or she would have wanted.

For example, consider:

» Did the person want all available treatment

measures or only certain ones?

» Did the person want medication to fight pain

but not infection?

Stay true to the person’s values and beliefs

Consider all factors that would influence the

person’s decisions about treatments, and

definitions of quality of life and death, including:

» Cultural background.

» Spirituality.

» Religious beliefs.

» Family values.

Be aware of the differences between your

values and beliefs, and those of the person with

Alzheimer’s. Make sure that his or her values and

beliefs are guiding your decision.

Weigh pros and cons of treatments

Talk with the medical care team about the impact

of using or refusing specific care treatments.

For example, ask:

» Will the treatment improve the person’s

condition or comfort?

» If so, how long will the treatment benefit the

person’s condition or comfort?

» Will the treatment create physical or

emotional burdens?

Compare any recommended treatments with the

person’s wishes for end-of-life care.

Consider where care will be given

Discuss with the care team if and when moving

someone to a different setting is best.

Find out if the treatment or care:

» Can be provided in familiar surroundings.

» Requires transfer to another setting.

Sometimes the temporary transfer to a hospital

for a procedure is disorienting and may be harmful

to the person.

Understand the difference between

withholding treatment and assisted suicide

Refusal or withdrawal of treatment, including

tube feeding, antibiotics or CPR, is not assisted

suicide (euthanasia). Limiting treatments lets

the disease take its natural course and supports

the person’s comfort and dignity. If aggressive

medical treatment is refused or withdrawn, the

care team will still provide good physical and

emotional care, as well as ensure the person is

not in pain.

QUESTIONS TO

ASK THE DOCTOR

1. What is the treatment for?

2. How will it help?

3. What are the physical risks or possible

discomforts?

4. What are the emotional risks or possible

discomforts?

5. Does the treatment match what the

person would have wanted?

6. Are we doing all we can to maintain the

person’s dignity?

7. Are we doing all we can to give the

person the best quality of life?

8. Is he or she in pain?

9. What can be done to ease the pain?

10. When is the best time to ask for

hospice care?

RESOLVING FAMILY

CONFLICTS

Family members need to take part in ongoing

discussions when making decisions on behalf

of their relative. Some may disagree about a

recommended treatment and get angry or

defensive. Or, they may refuse to engage in

discussions because they feel the family is

“planning for death.”

TIPS FOR DEALING WITH

FAMILY CONFLICT

Listen to each family member with respect

Family members may have different opinions

about end-of-life preferences and quality of

care. They may not fully accept that the person

is approaching death. Help family members avoid

blaming or attacking each other, as this will only

cause more hurt.

Involve a third party

A mediator, physician, nurse, social worker or

spiritual leader can be asked to facilitate family

meetings and help work through difficult issues.

Cope with your feelings together

The approaching death of a family member is

an emotional time for everyone and may cause

people to act in unusual ways. Caregivers and

their families may want to seek emotional

support, particularly during the last stage of

the disease.

Contact the Alzheimer’s Association to find

support groups that can help your family

work through emotions such as stress, guilt,

depression, grief and anger.

ARRANGING FOR A

BRAIN AUTOPSY

A brain autopsy involves a researcher or physician

examining the brain after death to look for the

plaques and tangles found in brains affected by

Alzheimer’s. It is the definitive way to confirm

a diagnosis of Alzheimer’s and may provide

information researchers can use to better

understand the disease.

A brain autopsy may involve cost and special

arrangements. Some brain donation programs

provide a free autopsy report. Make the decision

for an autopsy before the person’s death. Contact

the Alzheimer’s Association to learn more.

SUPPORT FOR YOUR FAMILY

24/7 Helpline:

800.272.3900

(TTY: 866.403.3073)

Alzheimer’s and Dementia Caregiver Center:

alz.org/care

Additional services available nationwide:

alz.org/findus

TERMS YOU

SHOULD KNOW

Advance directives:

Legal documents that specify the type of medical

care a person wants to receive once he or she can

no longer make such decisions, and who should

be in charge of making them.

Aggressive medical care:

Care and treatments meant to prolong life when a

person is close to death.

Brain autopsy:

A scientific examination of brain tissue after

death that often allows doctors or researchers

to confirm if a person had Alzheimer’s or another

type of dementia.

Cardiopulmonary resuscitation (CPR):

CPR is an intervention used to restore function

when a person’s heart and/or breathing stop.

It may include mouth-to-mouth breathing, or

pressing on the chest to mimic heart function and

cause blood to circulate.

Do-not-resuscitate (DNR) order:

A DNR order, signed by a doctor based on a

patient’s wishes, instructs medical personnel to

not perform life-saving CPR or other procedures

to restart the heart or breathing once they have

ceased. Once signed, the DNR directive must be

placed in the patient’s chart.

Durable power of attorney for health care:

This document allows a person with dementia to

choose a partner, family member or trusted friend

to make decisions about care and treatment when

he or she is no longer able.

Feeding tube:

A tube that provides artificial nutrition when a

person is unable to eat. The most common type

of feeding tube is inserted through an incision in

the stomach.

Hospice care:

A type of palliative care provided at home, a

hospital or a residential care facility. Hospice

care is for an individual who has six months or

less to live.

IV hydration:

Providing liquids through a needle into a

person’s vein when he or she can no longer

drink independently.

Legal capacity:

The level of judgment and decision-making

ability needed to sign official documents or to

make medical and financial decisions.

Living will:

Written instructions that provide specific

preferences about the kind of medical treatment

a person would or would not want to receive.

Palliative care:

Care that focuses on relief from physical

suffering and improving quality of life.

The Alzheimer’s Association is the leading voluntary health

organization in Alzheimer’s care, support and research.

Our mission is to eliminate Alzheimer’s disease through

the advancement of research; to provide and enhance

care and support for all aﬀected; and to reduce the risk

of dementia through the promotion of brain health.

Our vision is a world without Alzheimer’s disease®.

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an endorsement of these parties or their activities by the Alzheimer’s Association.

alz.org/care

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