What decisions will I need to make?

The importance of planning ahead

“Have you talked to your parents about the kind of care they would want? Don’t be scared to look ahead and figure out what the options are. You’ll be better prepared to make informed decisions when the time comes, without the accompanying emotional stress.” – Barbara Dylla, a former caregiver in Montreal.

Due to the progression of Alzheimer’s disease and other dementias, the person with dementia will eventually become unable to express their wishes. Family members and health-care professionals often have to make difficult decisions on behalf of the person with dementia. Families can benefit greatly from knowing the person’s wishes in advance.

It’s human nature to try to avoid talking about sad and difficult topics like end of life. But by taking an active role in preparing for this stage, individuals and families can get on with their day to day lives knowing they have taken important steps to ensure that the care provided at the end of life will reflect the person’s wishes, beliefs and values.

Most of us want to die in a peaceful, dignified and pain-free way, close to the people who are important to us and with our wishes, beliefs and values respected. Research indicates that discussing goals and preferences regarding end-of-life care early on increases the likelihood that a person with dementia will be comfortable at the end of life.

Talking early on about what the person wants

Shortly after Juliet was diagnosed with Alzheimer’s disease at 65, she and her partner Martin began to talk about her wishes with respect to care throughout the course of the disease and at the end of her life. She expressed her thoughts verbally and updated her will to reflect her wishes in case of incapacity. “Juliet was lucid, and able to read and write. She wanted no heroic efforts to prolong her life beyond what was reasonable and didn’t want to be kept alive by artificial means. She was clear and emphatic about that because of her past experiences with one sibling and her parents,” says Martin, a retired engineer in Edmonton.

He too strongly believed in talking openly and frankly with Juliet about the end of life. “I felt it was important to talk with Juliet about death. My mother took a long time to die from cancer. My parents never spoke about death with each other, even at the very end. I wanted it to be different with Juliet and me,” says Martin.

Juliet told him that she wanted her cremated remains to be buried in a cemetery in Grande Prairie, Alberta where she was born and raised. They also pre-arranged her funeral five years before Juliet died in December, 2013. “We talked all the time about all kinds of things. To know specifically what she wanted in end-of-life care and after-life care was extremely important and helpful. Pre-planning the funeral was a big decision to make but it took a tremendous amount of pressure off,” says Martin.

Advance care planning

Advance care planning is the process of planning for a person’s future health-care based on conversations about their values and beliefs. Developing a clear plan in advance can reduce family distress and help ensure that the person receives the end-of-life care that they want.

“The window of opportunity to include the person in end-of-life decisions is well before they are gone. I started having these discussions with my parents as they were aging and getting more frail. I asked, ‘what would you like us to do?’ I believe in being proactive because it helps in the end.” – Rachael Mierke, a caregiver in Winnipeg.

What should be discussed?

It is important that everyone involved in the conversation understands the progression of the disease and the typical needs near end of life so that you are able to talk about these issues early on.

Some questions you might want to think about and discuss are:

• If given a choice, would the person prefer to die where they are living (e.g. at home or in a long-term care home), in a hospice or in the hospital?
• What medical interventions, if any, such as cardiopulmonary resuscitation (CPR) or feeding tubes, would the person want?
• Does the person have any special wishes at the time of death, such as family and friends nearby, music playing, or specific faith or cultural rituals?

A person’s verbal wishes can be just as valid as a legal document, such as a living will or advance health directive, although it is still a good idea for the person to write down their wishes. A written advance care plan can name someone to be a substitute decision-maker when the person with dementia is no longer able to express their wishes for health and personal care decisions.

Additional resources

• Speak up advance care planning workbook by the Canadian Hospice Palliative Care Association
• Decision-Making: Respecting Individual Choice in the Alzheimer Society’s Conversations series

Tips for talking about end of life

“Choose a person you can trust who will follow your direction.” – Rachael Mierke, a caregiver in Winnipeg.

Talking about end of life can be difficult for everyone but you may even find some relief in having the subject out in the open. Talking about it early on can help you face your worries together.

You don’t have to talk about everything at once and there is no right or wrong way to approach this subject. Here are some suggestions that might help:

• Choose a time and place where you both feel safe and comfortable.
• Feel free to acknowledge the difficulty of talking about end of life. Using humour, when appropriate, may relieve pressure.
• If the other person refuses to talk or changes the subject, try saying “That is okay, we don’t have to talk about it right now but it is something I would like to talk about soon. I want to be sure I know your wishes so I can act on them when the time comes.”
• It is okay to express your emotions, including your sadness. Talking about a person’s end of life can be upsetting.
• If you find the discussion overwhelming, suggest continuing the conversation at another time. You do not have to talk about everything all at once.
• This is a conversation about you and the person you support, so encourage the person with dementia to be involved in it as much as they are able.

Appointing substitute decision-maker(s)

The Substitute Decision-Maker (SDM) is the person chosen to make personal care decisions, including medical decisions, for the person with dementia when they are no longer considered capable of making them alone. The laws regarding substitute decision-makers vary from province to province across Canada.

Who should this person be?

The substitute decision-maker should be someone whom the person with dementia trusts to carry out their wishes, such as a family member or a close friend. If the person with dementia does not appoint a substitute decision-maker, most provinces and territories have a priority list, usually starting with family members. It is important to understand that the people in the list will be asked in priority sequence to act on behalf of the person, regardless of how close their relationship was to the person.

Making decisions

In making decisions about end-of-life care, guidance can be found in written documents, known as advance directives, and conversations in which the person expressed their wishes. If the person’s wishes have not been written down or expressed verbally, decisions will need to be made based on the person’s lifelong desires and values and what you think the person would want. You may have to weigh the risks and benefits of the decision, and assess how it will affect the person’s quality of life and well-being.

Medical care decisions

It’s important for the substitute decision-maker to seek advice in advance and work with the health-care team. Understanding and discussing medical treatment options at end of life in advance can be very helpful in making the appropriate decisions when the time comes.

Decisions around aggressive medical care

The substitute decision-maker needs to know the person’s wishes regarding the use of aggressive medical care to help keep them alive. The following are some of the measures that commonly arise:

• Antibiotics may be prescribed to treat common infections.
• Cardiopulmonary resuscitation (CPR) is an emergency life-saving procedure that is done when a person’s breathing or heartbeat has stopped. A Do not resuscitate (DNR) or Do not attempt resuscitation (DNAR) order tells the medical professionals not to perform CPR if the person’s breathing or heartbeat stops.
• Feeding tubes are sometimes suggested if a person has a difficult time eating or swallowing.
• Intravenous (IV) hydration is liquid administered to a person through a needle in a vein in the hand or another part of the body.
• A ventilator may be used to assist with breathing if the person cannot breathe on their own.

What types of medical care decisions will need to be made?

Be sure to ask and learn what choices the person with dementia would make with respect to issues such as resuscitation, artificial hydration, feeding tubes, ventilators and emergency hospitalization.

• Would the person want to undergo medical treatments that may be somewhat invasive as death approaches?
• What personalized comfort care do they want?
• At the end of life, would the person want to be transferred to a hospita knowing that a change in environment may be frightening and disorienting?
• Would the person want to remain in the familiar environment of their home or long-term care home if possible?

Palliative care

Aggressive treatments and procedures that may cause fear or discomfort may not be in the person’s best interests. However, deciding not to use extreme measures to keep the person alive does not mean withholding all treatments. The goal of palliative care is to reduce distress, provide enhanced comfort, quality of life, dignity and pain control.

Palliative care does not mean stopping all treatments. The person may continue to receive medications for chronic conditions such as diabetes or high blood pressure, as well as treatments that reduce pain and discomfort.

A palliative approach to dementia care should be applied as early in the disease as possible. Research indicates that a palliative approach to care is essential for good-quality end-of-life care and dying well with dementia. Ongoing discussions should be had with the health-care team to ensure the best comfort care for the person at all times.

Questions you may wish to ask the doctor before making decisions about medical treatment:

1. Which health conditions of the person are treatable? Which are not?
2. Will the proposed treatment bring physical comfort?
3. Are there side effects to the treatment? If so, what are they?
4. How can symptoms be safely and effectively managed?
5. Will the proposed treatment require time in the hospital? If so, for how long?
6. Is the proposed treatment painful for the person?
7. What can be expected to happen in the coming days or weeks?
8. What can we expect if we choose not to have any treatment?

Brain donation and/or autopsy

Since much of the research into Alzheimer’s disease and other dementias relies on studying brain tissues that have been donated after the person has died, many individuals and families feel that brain donation is one way to increase the likelihood that we will one day cure this condition.

If brain donation is something you wish to consider, it must occur as soon as possible after death. As this is naturally a difficult time, it is important to discuss brain tissue donation in advance and to learn about the options available in your area.

Funeral / memorial arrangements

In the early stages of the disease, you can help the person with dementia choose to make all or most of their arrangements in advance of death, such as the planning and pre-payment for a funeral or memorial service, and burial or cremation. The advantages of doing this early on are that the person with dementia is able to make their wishes known and you are not requested to make many difficult decisions or arrangements.

Even if you haven’t done a great deal of advance planning, it is very helpful to make some preliminary plans in advance regarding the choice of funeral director, the type of service and where it will be held, who will officiate, whether you want music or readings, and whether a burial or cremation is preferred.

“Pre-planning the funeral while my mom still had her faculties was a huge help. I couldn’t imagine having to go through all that without her direction.” – Debbie George, a caregiver in Halifax.

For other people, however, making arrangements in advance may seem too final an action or too emotionally difficult. Whatever the degree of planning that has been done, it is important to know about the arrangements that need to be made after death.

Practical things to consider

• If the death is likely to occur in a long-term care home or hospital:
  • Talk with the staff in advance if your faith, cultural or ethnic background requires any special customs or rituals after death, so that they can plan with you.
  • Ask about end-of-life programs such as a guest room for privacy, comfort baskets and dignity robes to prepare the body for final viewing.
  • The long-term care home may also have a respectful ritual to honour the person and family when the body is removed.
• If the death is likely to occur at home:
  • Communicate with health-care providers (such as home care nurses) who need to be contacted at the time of death. As soon as possible after the person dies, an appropriate medical professional such as a doctor or nurse must be contacted to pronounce death. It may not be appropriate to call the emergency services if aggressive treatment is not in keeping with the person’s wishes, since ambulance crews are required by law to provide aggressive life-saving treatment unless a Do not resuscitate (DNR) order is in place.
• Write a newspaper obituary.
• Make decisions about gifts to charity. Include the information in the obituary.
• Keep a record of cards, visitors and donations so these can be acknowledged later.
• When planning the timing of the funeral, consider the schedules of people coming from out of town.
• Some people record the service so the words can be replayed anytime and be sent to those who could not attend the service.

"I wanted to do my mom’s eulogy. That was the end of the journey together through Alzheimer’s. My niece wrote a poem for mom and read it at the funeral. Mom had a lot of the arrangements pre-planned, which was a huge relief for me." – Debbie George, a caregiver in Nova Scotia

Additional resources

• Planning a funeral from Canadian Virtual Hospice