As the implementation of a national Canadian policy on assisted dying approaches, we increasingly read articles and hear on the news discussion about the right to die. This month Elder Voice focuses on another aspect of the question: the right of someone to live and how that decision is made.
Several years ago we walked into a nursing home and were greeted by the nursing coordinator, dietitian, and nurse and ushered into a meeting room. In brief, we were told that our client’s ability to swallow had decreased dramatically over the previous two days and the best thing to do was keep her comfortable and let her die. The implication was that she was 85, did not have a great quality of life, and we all have to go sometime. The problem was, no one had asked her what she wanted. Even though she had some degree of dementia, when we went to talk to her about her condition she was alert and able to acknowledge she was having trouble eating but also to tell us quite clearly, ” I want a machine.” When we brought her to hospital finally, they hydrated her, changed her food texture–and she was able to eat. She did die about eight weeks later–but when she was ready to have medical procedures stopped. Unfortunately, this was not the only time we have encountered nursing home and hospital personnel making decisions to stop treatment without input from our clients or their families.
Comfort Measures is the term that is used to describe the care provided when a decision is made to let someone die.It can be described as the end stage of palliative care. It is the time when nourishment is stopped (except on request ), when all medications or treatments are withheld and the primary medical focus is to keep people pain free and comfortable until they die. Typically comfort measures are initiated when a person cannot take nourishment by mouth, when they are non responsive, at the very end stage of a disease such as cancer, etc.–the assessment is that the person has only days, or a week or two to live. In a hospital or care facility, the order for comfort measures generally comes from a doctor, with input from other professionals.
Although the decision to begin comfort measures is generally made when someone is thought to be close to death, and with sensitivity and compassion,it is often also based on the values and beliefs embedded in our care systems, and includes judgments and assumptions about a person’s quality of life. Examples might include:
- she is XX years old, she has has had a good life
- it is cruel to keep on providing care
- no one should have to live like that
- at their age they should not have a feeding tube
- they will have no quality of life
We are not disputing that the above are sometimes valid reasons for allowing someone to die. However, they may not be the values or beliefs of the person about and for whom the decision is being made. Moreover, even when someone has previously signed advanced care directives, they may wish to (and have a right to) change their mind when a situation arises.
People need the time to accept what is happening to them and it should be their right, as much as possible, to die when they are ready, not when someone else decides they should. As the right to assisted death comes closer, it is even more imperative that we acknowledge and stand by people so that they do not feel pressured to choose death over their desire and right to live.
There are also systemic reasons that we hear consistently for instituting comfort measures. These include:
- we do not do feeding tubes
- we do not do IV’s in our facility
- we can’t keep bringing someone back and forth to hospital
- we do not have staff here to care for them in that condition.
- he is too old for that procedure (we think this is different than a risk being too high)
While these are indeed issues within our health care system, they are not insurmountable. They should not be the factors on which life and death decisions are made by staff and administrators.
It is very important for families, caregivers, and in fact, anyone who may live in care or be in hospital to know that, as with our client described above, it is not uncommon for a family to be informed only after an order for comfort measures is made. Even when the individual is alert and able to have some input, they may not be consulted. When families are consulted, it is at times presented as the best choice as opposed to an open discussion of options.
When dealing with the medical system people should be very clear that they want to be involved in making the decision to institute comfort measures, and not be informed after that it has been done, nor pressured into doing so. While they may be grieving as they try to make a decision, what might be labelled denial or grief by medical personnel may in fact be reasonable and valid advocacy on behalf of the person. The care team leader should always be the individual, or if they are unable to do so, their caregivers, friends, and families.
Next month Elder Voice will describe recommended policies and regulations regarding the decision to implement comfort measures only. We will be sending these to the provincial government and to the health authorities.
Safely Home: A Programme from the Alzheimer Society of Canada
The February 2016 Elder Voice focused on the issue of being prepared for wandering by people with dementia. We thought it is important to highlight that the Alzheimer Society of B.C. can assist people with dementia and their families to explore a variety of practical strategies to minimize the risk of wandering.
One strategy is to be prepared in the event that wandering occurs. An important and valuable tool in this preparation is the MedicAlert® Safely Home® program, offered by the Alzheimer Society of Canada and MedicAlert Foundation Canada. It ensures someone always has identification. Members receive engraved identification, which allows police and emergency responders to quickly identify the person who has wandered and assist in a safe return home.
To download the Alzheimer Society of B.C’s Wandering Package tools and to get information about the MedicAlert® Safely Home® program visit alzbc.org/what_is_wandering or call the Alzheimer Society of B.C.’s First Link® Dementia Helpline toll-free at 1-800-936-6033.