Dementia and end-of-life care
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 hospital 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?
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:
- Which health conditions of the person are treatable? Which are not?
- Will the proposed treatment bring physical comfort?
- Are there side effects to the treatment? If so, what are they?
- How can symptoms be safely and effectively managed?
- Will the proposed treatment require time in the hospital? If so, for how long?
- Is the proposed treatment painful for the person?
- What can be expected to happen in the coming days or weeks?
- What can we expect if we choose not to have any treatment?
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