Sedation at the end of life: a legal grey zone

As questions mount regarding what legislation the federal government will enact around doctor-assisted suicide, one end-of-life medical practice receives little public attention.

It’s called Continuous Palliative Sedation Therapy (CPST). Formerly known as “terminal sedation,” the therapy is used when all other attempts to relieve a patient’s excessive suffering have failed, and the only option is to reduce a patient’s level of consciousness. Considered a “last resort” therapy, the sedation most often continues until death.

According to James Downar, a critical care and palliative care staff physician at the Toronto General Hospital, CPST leaves a patient unable to communicate effectively or at all.

Is it a form of euthanasia? That depends on who you ask.

What is Continuous Palliative Sedation Therapy and when is it used?

In Canada, Continuous Palliative Sedation Therapy (CPST) involves the administration of sedatives, such as benzodiazepines or barbiturates, in a way so as to steadily maintain dramatically reduced consciousness in a patient with the overall goal of reducing symptoms that haven’t responded to other treatments.

Although there are no laws outlining the use of CPST, many doctors in Canada turn to recommendations published by the Canadian Society of Palliative Care Physicians Taskforce, which have been written by Mervyn Dean, who is currently a retired palliative care doctor in Newfoundland, along with several of his colleagues.

According to these guidelines, CPST should only be used when a patient has two weeks or less to live and when their symptoms are “refractory” – meaning that all other appropriate treatments have been tried and have failed.

CPST is most often used for breathlessness, or “the sensation of being short of breath all the time,” according to Russell Goldman, a physician and director of the Temmy Latner Centre for Palliative Care at Mount Sinai Hospital in Toronto. CPST can also be used when pain, nausea, delirium or other symptoms during the dying process are unmanageable.

Use of CPST appears to be rare. Goldman says only 2% to 3% of his palliative patients qualify for and want the therapy. It’s different from other forms of palliative care sedation patients may undergo, explains Downar. Doctors may unintentionally sedate a patient because sedation can be a side effect of painkillers, but CPST intentionally reduces the level of consciousness, explains Downar. CPST is also not the same thing as temporary sedation that may be given to calm a severely agitated patient in a crisis.

In most cases with CPST, sedation continues until death. In rare cases, however, patients may be woken up at some point, according to Downar. Perhaps a dying patient may be continuously sedated for a day or two to allow pain medication to work, says Downar, and then woken up in a day or two to see if the pain is still present.

The guidelines by Dean and his colleagues stipulate that the patient – or a substitute decision maker if the patient is not capable – must consent to the use of CPST. “Doctors discuss this long in advance with patients and family members,” says Downar. “You need to define what you’re sedating for, if you’re going to wake the person up, and if so, then how often you’re going to do that and for what reason.”

Patients can continue to experience some level of consciousness under sedation and may experience dreams. Doctors can never know for sure whether a patient under sedation is experiencing any psychological or physical suffering, though it’s believed they aren’t, says Downar. “When people wake up from sedation, most people remember nothing, but in rare cases some people will say ‘I was having these horrible dreams,’” he says.

Watching a loved one live their remaining days under sedation for days or even weeks can be “really unpleasant” for families, says Udo Schüklenk, professor of philosophy at Queen’s and an Ontario Research Chair in bioethics. Sandy Buchman, a palliative care doctor and quality improvement and patient engagement lead in Palliative Care at Cancer Care Ontario, says it’s important to explain the implications of CPST to family members as well as patients. When patients have requested the therapy, he says, families “almost always” support the decision. “They feel like they’re honouring their loved ones wishes,” he says.

Does continuous sedation hasten death?

CPST could speed up dying because patients usually aren’t fed or hydrated when they’re continuously sedated.

Because medical experts believe CPST doesn’t hasten death when applied only to people expected to die within two weeks, it is not seen as a controversial practice in the palliative care community.

“If you’re doing [Continuous Palliative Sedation Therapy] for a highly selective population, you’re not actually shortening their lives,” explains Downar. In fact, most people who undergo continuous palliative sedation have already stopped eating, in most cases because people near death tend to lose their appetite “as part of the dying process,” Goldman explains.

Studies support the theory that CPST doesn’t shorten lives when used appropriately. In a study of around 500 patients from Italy, 25% of patients opted to have CPST at the end of their lives. Researchers found those continuously sedated didn’t die earlier than patients in similar end-of-life states. A UK study of more than 200 patients, half of who received CPST, came to the same conclusion. Not all experts see these studies as conclusive, however, argues Schüklenk.

Whether or not CPST could shorten someone’s life, some bioethicists see CPST as distinct from euthanasia due to the intent of the act. With physician-assisted suicide, the doctor’s intent is to end the life. With CPST, the intent is to relieve suffering until a patient dies from a natural cause.

Schüklenk disagrees with this reasoning. “I’m a consequentialist,” he explains. Given that patients may die as a consequence of not drinking or eating due to sedation, CPST can, in such cases, be a “a form” of euthanasia, Schüklenk argues. (It would, of course, be next to impossible to know whether a patient died due to their disease or due to not drinking while being sedated).

Kerry Bowman, a bioethicist and professor at the University of Toronto, also doesn’t think that CPST should be separated from euthanasia simply on the basis of intent. “People may not be sure of their own intent,” he says. Doctors may primarily want to alleviate a patient’s suffering but they might be suggesting CPST because of a subconscious hope or “secondary intent” for a quicker death. Doctors could theoretically “misrepresent” their intent, says Bowman, claiming that they are using CPST to make a patient comfortable as he or she dies from a disease, when they may be helping a patient die sooner.

Bowman is quick to stress, however, that in his experience on palliative care wards, doctors “very carefully” consider the medical, ethical and legal implications of CPST. “I don’t want to paint a picture that hospitals are secretly hastening death, absolutely not,” he says.

Is legislation necessary around continuous palliative sedation therapy?

Jocelyn Downie, a professor of law in the Faculty of Medicine at Dalhousie University, is concerned that the practice of CPST is “not regulated.”

There is currently no legislation to govern CPST in Canada. Many doctors turn to the Canadian Society of Palliative Care Physicians Taskforce, but the document is not a legal one. Rather, the authors propose their document could be a “template for policy.”

In addition, some hospitals or health care authorities have policies around CPST. For example, the Fraser Health Authority’s policy states that CPST should only be used when a patient is expected to die “within days”. While the policies attempt to ensure that doctors do not use CPST in a way that could resemble euthanasia, Downie feels the policies are too vague.

For example, both the Taskforce’s and the Fraser Health Authority’s guidelines recommend that doctors “seek consultation” when considering using CPST to deal with existential or emotional rather than physical symptoms, but the documents give no guidance on what such consultation should entail.

Downie doesn’t fault the medical organizations that have created guidelines, however – it’s not up to doctors, but to lawmakers in a democratic process, to create rules around end-of-life health care practices, she points out. For example, legislation could stipulate more clearly when CPST could be used, who can consent to it, and the checks and balances necessary when it may hasten death.

In other countries, some have expressed concern that CPST has at times been used too early, as a form of euthanasia.

Schüklenk also feels that legal “clarification” is in order. He points out that it’s legal for a patient to refuse food and hydration, and it’s legal for a doctor to sedate a patient. But it’s not clear if the combination of the two could be interpreted as the doctor assisting in a patient’s refusal to eat or drink – the practice has never been challenged in a court case in Canada.

Dean, who helped develop the guidelines many doctors rely on, says while he is not opposed to legislation, he “cannot envisage how the legislation would be enforced.”  For example, the regulation of CPST according to the time a patient has to live, and the degree of a patient’s suffering could be legally defined, but it would still be up to doctors to use their own judgement regarding how close to death a patient is and how much a patient is suffering.

Buchman adds that most medical and surgical procedures that involve a risk of death from that procedure are not defined by law. “We don’t have laws for each and every surgical procedure but accepted standards of practice,” he explains.

Goldman recognizes that the line between euthanasia and CPST can be a fine one. It may not always be clear, for example, if a patient is wanting sedation because they have severe suffering or because they hope to end their life sooner.

It’s possible that legislation around physician-assisted dying (which the Supreme Court has ordered with a deadline of February) will include rules around CPST. Still, in the Netherlands, it’s been suggested CPST has been used in some cases as an alternative for those who didn’t meet the legal requirements of euthanasia.

It’s important to stress, however, that the use of CPST as a tool for euthanasia – if it could be proven – is illegal. The medical and ethical community in Canada are clear that CPST should only be used to relieve intractable symptoms that don’t respond to other therapies. As Goldman puts it, “you don’t want to be a bystander to suffering when you can potentially help someone.”

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  1. Jocelyn Downie

    I think it is useful to carefully distinguish between different kinds of continuous sedation combined with the withholding/withdrawal of artificial hydration and nutrition: 1) where death is imminent — intervention clearly will not shorten life; 2) where death is anticipated in a matter of weeks — intervention may but is not certain (or even likely) to shorten life; and 3) where death is not anticipated for many weeks — intervention is certain to shorten life. #1 and #2 are likely by far the most common (although we have no good data on this). #3 may be happening (again we have no good data on this) and may become more common in the future. Clarification is needed on the legal status of #1 and #2 (e.g., requirements for obtaining properly informed consent). More healthy debate is needed on #3 (i.e., what should the law be). Kudos for launching this discussion.

    • Scott

      My mother is beside me as I write this. She has chosen palliative sedation to end the suffering of copd the constant struggle and daily ritual of wake up , have some one clean you. Then try to eat with shaky hands and the whole bodily function process. She is a strong woman. Always has been. Knows what she wants and does what she says kind of woman. The woman who I luckily raised both my daughters to be. I married a woman similar to my mother because of her influence on me. As strong as she is equally if not more kind and considerate. Her choice for sedation was hers and hers alone. Clear and concise the way she lived her glorious life. She deserves to leave this world as peacefully respectfully as she lived her life. And I got one am very grateful that I live in a world where that choice is allowed to be made. Respectfully Scott

  2. Chris yen

    The practice of medicine and legal matters should be separated. Guidelines should be set, that are just guidelines.

  3. Elizabeth Doyle

    First of all, thank you to the authors for getting this conversation started. For now, I’m going to focus on the following and see where the discussion goes:

    “Whether or not CPST could shorten someone’s life, some bioethicists see CPST as distinct from euthanasia due to the intent of the act. With physician-assisted suicide, the doctor’s intent is to end the life. With CPST, the intent is to relieve suffering until a patient dies from a natural cause.”

    I have two thoughts: (1) Framing is so very important in describing the act. “Physician-assisted suicide” suggests that a physician is directly assisting in suicide. For that reason, I am inclined to describe the act as “medically-assisted death.” After all, “suicide” suggests that death is what is intended by the patient, where – most often in the literature – we find that “ending suffering” is what the patient is truly after. “Physician-assisted” suggests that the physician plays an active role in the death, but, in actuality, in jurisdictions where it is legal, the act consists in writing a prescription for a lethal dose of medication that the individual may or may not choose to have filled and self-ingest.

    (2) With respect to medically-assisted death, the physician’s “intent” is not to end the patient’s life. It is to provide/empower the patient with the choice to end his or her own life.

    Like Jocelyn, I also think that we need to talk about terminal sedation, and I think that, to properly do so, we need more data (and, for that, we need transparent reporting… unlikely at present given the medical climate).

    Elizabeth Doyle

  4. jessica bell

    I have always wondered why as so called intelligent human beings, we can not see the kindness of helping our loved ones die as fast as they can if they are ill or in pain. We will NOT allow our animals to suffer any longer then it takes to get them to the vet and PUT them to SLEEP. Why is it man kind has to be so self centered and cruel to deny this same type of kindness to humans? I for one want to find a dr who would inject me with some thing that would put me into a deep deep sleep, which I would never wake up from. I do not want to be scared, sick or in pain for months and years before I die. I want it in my will that should I become ill, or in a accident that has ruined my chance of a real life, I want to be put to sleep right now.. not when I have only sick months to live, or two days to live. I want to be injected the same day I am told I am dying.

  5. Judy

    I am sitting at my mother-in-laws bedside who has just been sedated. She has been begging the doctors and us for 4 days now to please help her die. Doctor says she has about 24 hours left now. She has said all her goodbyes, is at peace and ready to go. I can only see this as a blessing for her, to relieve her suffering and agitation is a mercy.

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