As part of the Globe's in-depth series on End of Life decisions in the 21st century, we asked for your questions on this difficult topic. Readers from across the country sent in their questions for Dr. Rob Fowler and Dr Damon Scales, critical care physicians at Sunnybrook Health Sciences Centre in Toronto.
My 81-year-old father had a stroke and has been on life support for almost year. He had no directive and my mother passed before he did. my siblings want to keep him this way but I don’t think it’s what he’d want. What are your suggestions for talking to them and ending his life now? -Murray
Murray, thank you for sharing your story with readers. I am sure that this past year has been a difficult and sometimes stressful one for you and your family. It is certainly natural and common that we want to do everything we can to increase the longevity and quality of life for our loved ones. I’m not certain of the exact kinds of life support that your father has required over the past year - sometimes patients require help receiving nutrition by a tube in the nose or stomach, others need support for their breathing on a mechanical ventilator, help for their kidneys with dialysis, and yet others have heart and blood vessel illness requiring infusion of medications to maintain their blood pressure.
In my experience, some of these forms of life support can be administered while maintaining quality of life. But with others, and especially multiple forms of the kinds of life support highlighted above, it becomes very challenging for patients over a long period of time.
That balance of quality and quantity of life is a very tough and individual decision to make. If the patient isn’t able to communicate, and make their own decisions, I always try to encourage families to try their best to make decisions based upon what the patient would themselves have wanted – you and your family likely know your father best. Even if there is some disagreement, often the big picture of what they would have wanted over what period of time emerges.
Again it is natural and one of the signs of a loving family that we want to keep our loved ones with us for as long as possible. Sometimes this personal desire for us all makes it hard to focus on what you think the patient would have wanted. I’d encourage you and siblings to, as much as you can, think about what you think he would have wanted if he could guide you in this tough situation.
When someone cannot breathe on their own - like my sister, who was in a car accident last year - are they in pain? So many people tell me she’s aware of what’s going on - but it doesn’t look like it at all. The doctors say she has very little brain function. What can she feel/hear? if it’s nothing - which i suspect - am i justified in asking for a DNR? -Kathleen
Knowing exactly what patients can sense – hear, feel, see – after a severe injury where there may be brain dysfunction is sometimes very tough.
Nurses, physicians and try to get a best estimate of this with bedside physical examination, focusing on a patient’s response to voice and stimulation, and provide some insight for family members who are uncertain. Imaging tests such as CT, MRI scans and measures of nerve impulses from the periphery of the body to the brain often provide more information.
When patients are persistently in minimally conscious or unconscious states, knowing what they sense is very very difficult. Recently, some studies have found that patients in these states do exhibit evidence that their brains sense things even when they don’t outwardly demonstrate a response. I often tell families (and colleagues) to talk with patients ‘as though they can hear you’, even if we think it is unlikely.
Your question about asking for a do not resuscitate order might be best guided by your sense of what your sister would have wanted if she could have imagined the condition she is in, in conjunction with the support and advice you receive from your sister’s nurses, doctors about what is likely (we can never know with absolute certainty) to occur with her condition over the coming days, weeks and months.
My family never wants to talk about death or dying - I’ve tried to express my wishes (if I can’t breathe on my own, please DNR), but no one wants to hear it. What do you recommend I do? -George
George, your family is in common company – many of us don’t want to think about getting seriously ill. I think that talking about your wishes, with your family and friends, is important, and this will be helpful to them should they ever need to help make decisions on your behalf.
Although I’ve found it is very hard to predict exactly how people will react and make choices when they find themselves in such a situation, their general thoughts, if they can speak about them and write them down, can be quite helpful to their family.
In addition to speaking with your family, I’d recommend looking at some examples of advance care directives that might be a good guide for your family, even if it is hard for them to talk about it now. The Speak Up website offers some very helpful resources for us all.
I’m about to be the primary caregiver to my father - who is very sick with stage 4 cancer - in his home. Do you have any advice? When should I call for emergency help? What are the signs that death is very close? - Robbie
Hi Robbie. First let me say that it is very admirable that you are taking on this responsibility. Second, I would point out that there are several resources available to help ensure patients can die peacefully at home, for example with help from some palliative care teams. (You should speak to your father’s doctors or a social worker to help give you some suggestions.)
You don’t even necessarily need to call emergency when death seems imminent, as long as steps have been taken to ensure that your father can die peacefully and without suffering. However, if these strategies and treatments aren’t yet in place, you should look for any signs that he appears uncomfortable or in distress, for example having difficult or laboured breathing, to seek support from a hospital. But it’s much better to plan ahead like you are doing, so that he doesn’t need to suffer needlessly.
My sister’s directive was to have me as her primary caregiver, in her home, when the hospital couldn’t do anything more. that time has come - I’ve been caring for her for 7 months now. My question is - as odd as it may sound - what actually medically defines death? - Ruby
Ruby, your question isn’t odd – in fact it’s very good. You might be surprised to learn that there is no Canada-wide legal definition of death. In Canada, each province oversees and manages its own healthcare system, and this means that there are slightly different legal definitions of death across the country. However, from a very practical standpoint death is determined when a physician (or a coroner) identifies that there is irreversible cessation of circulatory and respiratory functions, or irreversible cessation of all functions of the entire brain.
In other words, if the person is no longer responding to any stimuli, the pulse is no longer present, and there have been no breathing efforts – and this persists for at least 5 minutes or more, then the person can be pronounced dead.
I want to create a living will - but my husband argues it’s easy for a healthy person to ask for a DNR. He says I’d change my mind - if I do, when that time comes, how easy is it to change? Or is that set in stone now? -Jamie
Jamie, your question helps highlight some really important issues. First, your husband raises a key point: what one person considers to be acceptable can really change dramatically over a lifetime, whether we are discussing treatments or potential outcomes.
This has been repeatedly observed among patients who become quadriplegic, for example, who prior to an accident may have indicated that they would never want to live without movement but later manage to accept their condition and even have a good quality of life. For this reason, all physicians and nurses will appreciate that it is one’s right to change their feelings about a “do not resuscitate” order, depending on the context and their circumstances. The challenge that often arises, however, is that the person that needs to be resuscitated is often too sick to help make these decisions because of the very illness or accident that makes the resuscitation indicated.
Ultimately, we rely very heavily on families to help us estimate the patient’s wishes, because most critically ill patients are too sick to talk to us themselves. So, we always recommend that people have these “what if” discussions far in advance – when they are healthy – so that their loved ones can help us understand what they would or wouldn’t want done.
In your experience, how often is a patient kept alive when they have no brain function? do they literally just keep living in their bed on a machine until old age eventually takes them? - Kevin
Kevin, if physicians actually determine that there is absolutely no brain function – not even brain reflexes – then the patient can be declared dead because they meet criteria for brain death, and life support is stopped. In these situations, the family will often be approached to consider the option of organ donation (which can save the lives of several other people).
However, I think you are probably referring to situations that are much more common, where there is severe brain damage but not enough for the person to be declared dead according to these brain death criteria.
In these situations, we will meet with family members to help us understand what the person would have wanted us to do. In my experience, most people wouldn’t want to be “kept alive” on machines when there is very little or no chance of waking up.
For these patients, we will stop life support and focus on providing palliative care and ensuring that they are comfortable, but with the understanding that many of these patients will ultimately die.
In the less common situation, where a decision is made to keep someone living on life support indefinitely (yet knowing their brain function will not recover), things can go on for some time. However, being hooked up to prolonged life support inevitably leads to other complications, for example pneumonia or other infections, and these can often ultimately lead to death.