Finding proper care full of difficult decisions

Late stage of Alzheimer’s is an emotional time, but there are many options

My dad is in late-stage Alzheimer’s and not doing well. The doctors said we should start thinking about some decisions around care. This all sounds sad and complicated.

The late stage of Alzheimer’s disease is full of difficult decisions, as the individual’s health declines and they lose who they were.

The affected person can no longer move around independently, speak or be understood. They will need help with all activities of daily living. Swallowing and eating are usually an issue. In this situation, families are often at a loss about what to do.

If you are lucky, the person with dementia may have prepared an advance directive as to their wishes. However, this is rarely done.

If there is no advance directive, those closest to the patient — usually the family — must decide based on what they know about the person and believe they would choose. These decisions look not only to the person’s values and beliefs, but also what is needed to keep the person comfortable.

It is important to understand the decisions that are at stake. This means advocating and being aware of the situation that your relative is in, and keeping informed of all medical changes in their situation. These care decisions are among the hardest decisions that families may face.

Some examples of medical issues that may come up at the closure of life includes: ventilators (breathing tubes), feeding tubes, cardiac resuscitation and intravenous support.

Each therapy has its pros and cons.

For example, ventilators are used when a person can no longer breathe on their own, but they can cause distress and discomfort. Feeding tubes or lines are used when a person cannot swallow properly, but their use can result in infection and discomfort. Many medical experts also believe that feeding tubes don’t extend life.

Additionally, restraints may be needed to prevent an incapacitated patient from inadvertently removing the line. Hydration, administered through an intravenous line when a person cannot drink, does not provide the nutrients needed to sustain life and may prolong the dying process. Resuscitation (CPR) is used when heart function stops or when breathing stops.

This can be painful and traumatic and may leave a person in a worse state than before.

There may be differences between the wishes of the person with dementia and your personal beliefs. But it is their wishes that should direct their care. To feel less at a loss, you also need to ask the right types of questions. How will any given treatment help the patient’s situa- tion? How long will the help last? What might be the downside of the treatment? How will it affect the person’s pain and suffering? It may be helpful as well to ask the health care professionals the following question: “What would you want done if it was your relative who was so ill?”

Family conflicts may arise and mediation or support by a trained professional — physicians, social workers, spiritual leaders and other care providers — can help you talk these situations out. Hospitals often have staff with expertise in this area. Some family members may not be as able to come to terms with an upcoming death. Others may simply need time and mindful exploration.

There is no doubt that making decisions for those at life’s closure is difficult and fraught with uncertainty and risk. But thoughtful and open consideration of medical alternatives, and of the goals and risks of treatment is the best preparation of all.

A great resource is: Good Medicine: The Art of Ethical Care in Canada (Philip Hébert, M.D., Random House 2016). This is an easy-to-read guide for those faced with making these hard choices. Nira Rittenberg is an occupational therapist who specializes in geriatrics and dementia care at Baycrest Health Sciences Centre and in private practice. She is co-author of Dementia A Caregiver’s Guide available at baycrest.org/dacg. Email questions to caregivingwithnira@baycrest.org.

There may be differences between the wishes of the person dealing with dementia and your personal beliefs, but it is their wishes that should direct their care