Tag: Health / Medical
As estate practitioners, we usually meet our clients shortly after the death of a loved one. We hear stories about the deaths that precipitate so many of our files, but we rarely, if ever, are confronted with clients who are dying.
The National’s series “Public Health, Privates Lives” focuses on how the work of doctors and nurses impacts upon their private lives. One fascinating and inspiring episode looks at the life of Dr. Jeff Myers, the head of Palliative Care at Sunnybrook Hospital.
Dr. Myers’ job involves acting as an advocate for dying patients. He points out that our natural inclination as a society is to heal and fix problems, and that this is in direct contrast to the reality that we all die. He states that his role is not to augment the disease process, but to make the patient as comfortable as possible in their final days. In the clip, he visits with two patients and asks them what is important to them in the last few days or months of their lives. They both answer that they want to be free of pain. He asks one patient to “celebrate the small victories” rather than focus on what cannot be attained.
The best moment is when Dr. Myers asks us to consider what we would be doing differently– if we had 3 months or if we had 9 months left to live.
It is a short clip and worth watching if only to remind ourselves that we all die and that we should always be asking ourselves if we are spending our time on the things that are most important to us.
A University of Toronto team of scientists, led by a neurology professor, discovered a gene variant that predicts the time of day that you are most likely to die.
The study was originally conducted to try to find out why older people have difficulty sleeping and to try to identify early signs of Parkinson’s or Alzheimers, but branched off when a connection was found between sleep patterns and the time of death.
Dr. Andrew Lim’s study found a link between sleep patterns and the gene that plays a role in your internal biological clock. Morning people (defined as those who wake up before 7 a.m.) are more likely to have an “adenine nucleotide base”. Late-risers are more likely to have a “guanine nucleotide base.” Those who wake up somewhere in between have both gene variants.
What does this mean for the time of your death? If you are an early riser, you are more likely to die at around 11 a.m. If you are a late riser, you are more likely to die at around 6 p.m.
It seems that the Grim Reaper is a part time job with split shifts.
End of life decisions are painful and difficult subjects to face. Nobody wants loved ones to suffer needlessly from terminal illness, but nobody wants to let their loved ones go before their time. This deeply personal tension is playing out in the hospital room of Desmond Watson at Oakville-Trafalgar Hospital even as I write.
Desmond and his wife Maria have been married for 71 years. She has kept a bedside vigil over her husband for nearly three years. He is suffering from progressive dementia from which the hospital medical team believes he has no realistic chance of recovery. He has shown few signs of consciousness for some time. Their story, featured on the front page of the Toronto Star on October 20, 2012, is simultaneously heartbreaking and inspiring.
Conflict developed between Desmond’s family and his medical team about to what sort of measures should be taken to keep him alive. Maria argued that Desmond is a devout Catholic, and had expressed his beliefs that life is sacred and that he would not want his life support withdrawn. The medical team believes that they are only prolonging his suffering. In order to resolve this intractable conflict, they turned to Ontario’s Consent and Capacity Board (“CCB”) in early 2011.
Desmond had executed a Power of Attorney for Personal Care in 2001, which named Maria his substitute decisions maker. The Health Care Consent Act clarifies the principles which a substitute decision maker must follow when making decisions about treatment. S. 21 sets out that “[i]f the person knows of a wish applicable to the circumstances that the incapable person expressed while capable and after attaining 16 years of age, the person shall give or refuse consent in accordance with that wish”. If there is no known applicable wish, or it is impossible to comply with the wish, the decision must be made in the incapable person’s best interests. The Act goes on to provide guidance on how to determine what the incapable person’s best interests are in s. 21(2). One must consider the incapable person’s values and beliefs, the likely effects of treatment or its alternatives, and any wishes they may have expressed while not capable.
Maria testified that Desmond’s beliefs would mean that he would wish to be kept alive and undergo aggressive treatment. The CCB found that Maria had indeed complied with her obligations under the Act. The CCB decision is available on CanLii (DW (Re), 2011 CanLII 18217 (ON CCB).)
Tragically, the situation the Watsons find themselves in is not unique. As Ontario’s population ages and life-extending technologies improve, these conflicts will only increase in frequency.
To ensure your end-of-life choices are respected, put that wish in writing while capable, ideally in the Power of Attorney itself.
Section 10 of Ontario’s Health Care Consent Act 1996 (“the Act”) states that a health practitioner shall not administer a treatment for a person unless the person has given consent (if capable with respect to the treatment) or if the person’s substitute decision maker has given consent on the person’s behalf (if incapable with respect to the treatment). Simple concept at first blush, but a closer examination reveals some complexities, a handful of which we’ll explore below.
What constitutes informed consent?
One of the defining elements of consent to treatment, is that such consent must be “informed”. By framing consent in this way, the Act promotes communication between health practitioners and their patients or clients and encourages patients to exercise their autonomy. According to the Act, a consent to treatment is informed if, before giving it,
a) The person received the information about the treatment that a reasonable person in the same circumstances would require to make a decision and
b) The person received responses to his/her requests for additional information about the treatment.
Information provided by the health practitioner must include the nature of the treatment (diagnosis and recommended treatment), expected benefits, its material risks and side effects, alternative courses of action (if any) and the likely consequences of not having the treatment. If the patient is deemed to be incapable, then the practitioner must identify the substitute decision-maker (s. 20 (1) of the Act sets out a specific hierarchy of individuals/agencies who may give or refuse consent) and go through the same process to obtain consent.
In a tragic case decided in 2009 (upheld on appeal earlier this year) involving catastrophic injury to an infant sustained at birth as a result of an unsuccessful attempt at a forceps-assisted delivery, the trial judge found that the doctor in question failed to obtain informed consent to that procedure. Risks and benefits of the assisted delivery had not been explained to the mother, nor had the option of continuing to push been presented to her for consideration.
What constitutes informed refusal?
Election to forgo the treatment recommended by the practitioner after the disclosure of the relevant information constitutes “informed refusal”. A competent patient may refuse a treatment, even if it is in their best interests to have the treatment administered. The CMA Code of Ethics (2004) states that the practitioner has a responsibility to respect the right of a patient to reject any medical care recommended.
The Act considers refusal of consent to include withdrawal of consent.
When may the requirement for consent to treatment be waived?
Consent from a capable patient may be waived if the situation is deemed by the health practitioner to be an emergency (i.e. the person is experiencing severe suffering or is at risk of sustaining serious bodily harm if the treatment is not administered promptly). Similarly, a treatment may be given without consent to an incapable person if there is an emergency and the delay required to obtain consent/refusal on the person’s behalf will prolong the person’s suffering or will put the person at risk of sustaining serious bodily harm. Interestingly, in an emergency situation, in the event that a substitute decision-maker is present and refuses to consent to treatment and is not acting in accordance with prior known wishes or is not acting in the patient’s best interests, then s. 27 of the Act gives the practitioner the power to administer treatment despite the refusal.
What is the age of consent in Ontario?
Contrary to widespread belief, there is no age of consent in Ontario. Instead, the principles of capacity (to consent to treatment) are applied, as per s. 4 (1) of the Act, i.e. does the person understand the information that is salient to the decision, and do they appreciate the reasonably foreseeable consequences of a decision or a lack of decision. In short, the concept of maturity is used as the yardstick, rather than chronological age. The issue of age of consent has come under the spotlight in recent years as a result of Ontario’s school-based HPV (Human Papillomavirus) immunization program for Grade 8 girls. All of Ontario’s Public Health Units request parental consent before HPV immunization at school-based clinics. That being said, a student who is deemed to be capable with regards to consenting to or refusing the immunization has the right to do so, irrespective of whether their parent signed or did not sign the consent form on their behalf.
In their Consent to Treatment Policy (#4-05), the College of Physicians and Surgeons of Ontario supports this framework by stating that "the capacity to exercise independent judgment for health care decisions varies according to the individual and the complexity of the decision at hand. Physicians must make a determination of capacity to consent for a child just as they would for an adult."
- ‘Health practitioner’ refers to a member of a College under the Regulated Health Professions Act, 1991, a naturopath registered as a drugless therapist under the Drugless Practitioners Act or a member of a category of persons prescribed by the regulations as health practitioners. Examples include (but are not limited to) physicians, dentists, physiotherapists, and nurses.
- As per the HCCA, ‘treatment’ means anything that is done for a therapeutic, preventive, palliative, diagnostic, cosmetic or other health-related purpose, and includes a course of treatment, plan of treatment or community treatment plan.
Across Canada, there currently exists an ‘opt-in’ framework for organ donation. Also known as ‘express consent’, this framework is defined by the presence of an explicit mechanism (e.g. signing of a donor card or registration with a regional organ donation society) by which one makes their wishes known. Our least populated province may be the first to eschew this system.
As reported on Tuesday, Health P.E.I. is considering a shift towards an ‘opt-out’ donation program in an effort to increase the organ yield in their province. Under such a ‘presumed consent’ scheme, a person is automatically considered an organ donor upon their death, unless the deceased had registered their objection while alive. A presumed consent organ donation program is not a new idea; in France, Spain, Portugal, Greece, Luxembourg, Italy, Austria, Belgium Netherlands, Singapore and Germany, organs and tissues are essentially considered property of the state unless one actively opts out in his/her lifetime. By 2015, Wales hopes to become the first in the UK to join the opt-out trend.
Are there advantages to a presumed consent regime? Don Mills, CEO of Corporate Research Associates summed it aptly: “Most people, if you ask them directly to become an organ donor, they probably will. But if you make them work for it, they’re probably not going to pay too much attention.” A 2006 U.S. meta-analysis concluded that indeed, opt-out programs had a ‘positive and sizeable effect on organ donation rates’. Nonetheless, in 2007, the Citizens Panel on Increasing Organ and Tissue Donation rejected a presumed consent framework as a means by which donation rates in Ontario could be boosted, and referred to such a framework as ‘too passive a method to be a clear statement of an individual’s intent.’
Canada’s donation rate (14.4 donors per million population) is one of the lowest in the developing world, and a report released by the Canadian Institute for Health Information earlier this year showed that across the nation, living and deceased donor rates have stagnated since 2006. 30% of people waiting for an organ transplant in Canada die on the waiting list. Organ donation is a hot topic at present, particularly in the wake of double-lung recipient Hélène Campbell’s herculean efforts in the social media arena to engage both public discussion and personal reflection. This conversation is clearly long overdue. Will P.E.I.’s voice lead the way?
Jennifer Hartman, guest blogger
[In the spirit of full disclosure, the author’s father-in-law is a member of the Health P.E.I. Board.]
80 percent of Canadians do not have a Living Will to express what types of care they would and would not accept to prolong their lives, according to a national poll. Less than 50 percent have discussed the issue with their loved ones, and only 9 percent have discussed their wishes with their doctor. Less than 50 percent have chosen who would act as their substitute decision maker if they became incapacitated.
Canadians, as a whole, wait until it is too late to make end-of-life treatment decisions, according to Dr. Daren Heyland, professor of medicine at Queen’s University, as quoted by the Vancouver Sun. "We’re harming people at the end of life when we should be celebrating their lives and providing them with dignified comfort measures."
Dr. Heyland and his colleagues interviewed elderly patients at the end of their lives and asked them what types of medical intervention they would want. They found that only 1/3 of the patients’ wishes corresponded with the "code status" on their charts.
Dr. Robert Fowler, an associate professor in medicine and critical care at the University of Toronto said, "the expectation today is that every illness can be cured, and that there is always hope. We’re going to have to come to terms with the notion that death is inevitable. Clearly, for all of us, there is ultimately going to be something that can’t be cured."
While people are well, they should make decisions about the types of invasive care they would want, because once they are in the intensive care unit, it may be too late to make critical decisions that may increase their pain and suffering, diminish their quality of life, and may only prolong their death.
"How we help our aging population is one of the ways we measure success as a nation, and measure success as a collective humanity," stated McMaster president Patrick Deane, upon accepting a private donation of 10 million dollars to fund research of "optimal aging."
The generous donation was made by Suzanne Labarge, a McMaster alumnae who retired as the Vice-Chairman and Chief Risk Manager of the Royal Bank of Canada. The Globe and Mail reports that Ms. Labarge was motivated to make the donation because, as she says, "it’s a national priority. I hope the donation will help us answer the right questions."
So far, projects that have been granted funding from the donation include research as how to improve car designs for older drivers and a study on the effects of yoga on older women with arthritis.
Money, heirlooms and other property are not the only items one can leave behind on death. Much time and attention is spent on making arrangements for burial and on other aspects of estate planning. However, often overlooked during the estate planning process are the most valuable gifts a person has to give – their organs. Although an emotionally charged and deeply personal subject, the decision to donate or not to donate organs ought to be considered when planning ahead for what happens when we die.
The regime for organ donation in Ontario is governed by the Trillium Gift of Life Network Act. The Act sets out who may give consent to donate organs for implantation, for medical education, or for scientific research. Consent can be given by the donor in writing at any time, so long as he or she is over the age of sixteen. Consent can also be given verbally, but verbal consent is only valid if it is given during the donor’s last illness, and in the presence of two witnesses. An organ donor card may be helpful as it may constitute written consent. However, if the card is not immediately available at the time of death, it may not be discovered until it is too late.
Many difficult end-of-life decisions can be dealt with by way of a power of attorney for personal care such as to what extent extraordinary life-extending measures may be taken. This can save loved ones from having to make these agonizing decisions under such trying circumstances. Unfortunately, this is not the case when it comes to organ donation. A power of attorney ceases to operate on death. The Substitute Decisions Act at section 66(14), read together with section 67, specifically exempts "[t]he removal of regenerative or non-regenerative tissue for implantation in another person’s body" from the ambit of the Act, and therefore the powers that can be granted under a power of attorney.
If there is no consent from the potential donor, this difficult decision is left in the hands of the grieving family. The person’s spouse, if available, will be forced to decide during one of the most difficult times of his or her life. If there is no spouse or if the spouse is unavailable, the responsibility will fall to the person’s children, then parents, then siblings, then next of kin, and finally to the person in legal possession of the body, in that order.
It is very important, therefore, that your wishes with respect to organ donation are made known in advance to your loved ones or to whoever may be at your bedside at the time of death. While not an easy conversation to initiate, it is a very important one to have. The issue should be given some attention when preparing a will or estate plan, giving a power of attorney, or before undergoing a risky medical procedure.
The most effective way to ensure that your wishes are followed at the time of death is to register with the Trillium Gift of Life Network. The Network allows you to register your consent in a secure database that will only be accessed in the event of your death or imminent death after all life-saving efforts have failed. It is a sure and secure way to make known your wishes either to donate or not to donate. Online registration is available here.
The Trillium Gift of Life Network is a great resource for information on organ donation. Whether you would prefer to preserve the integrity of your body on death, or to give a potentially life-saving gift, it is important to take the proper steps in advance to ensure that your most important testamentary wishes are followed.
As of last night, the parents of Junior Seau, who are from the island of Aunu’u, American Samoa, were meeting with Samoan elders to discuss how to respond to requests by researchers for the opportunity to study Seau’s brain. Last Wednesday, Seau, former linebacker for the San Diego Chargers, was found dead in his Oceanside, California home. His death was ruled a suicide. The media is saturated this week with discussion of whether Seau’s NFL career played a role in his early death. There are a number of indisputable facts, between which one can interpolate:
• Seau took his own life by shooting himself in the chest. Fifteen months ago, former NFL safety Dave Duerson died of a self-inflicted gunshot wound to the chest, having left a suicide note asking for his brain to be donated for research. The Boston University School of Medicine Center for the Study of Traumatic Encephalopathy determined that Duerson’s brain indeed showed signs of CTE, the progressive, degenerative disease associated with repetitive closed head injuries.
• Up until April 19, 2012, Former Atlanta Falcons safety Ray Easterling was the lead plaintiff in a class action lawsuit against the NFL over concussion-related injuries. Since his death last month, by suicide, his widow has vowed to continue to fight the lawsuit her husband started after 20 years of suffering from symptoms of repetitive head trauma including memory loss, mood changes and depression.
• According to a 2011 study conducted by the Matthew A. Gfeller Sport-Related Traumatic Brain Injury Research Center at the University of North Carolina, the average life expectancy of a retired NFL player is 55 years. Some insurance providers have indicated that this is actually an overestimation, and that in fact the average age is somewhere closer to 51 years. For comparison purposes, the average male life expectancy in the United States is 78.2 years. [Note: If you played for the San Diego Chargers in 1994’s Super Bowl XXIX, then the odds against you are significantly grimmer. Eight of those teammates are dead, all before reaching the age of 45; a statistical anomaly since the 8 deaths lacked common cause.]
• The same UNC study suggested that retired NFL players suffer from dementia at a 37% higher rate than average.
• A 2006 report in the St. Petersburg Times found that the more games and practices an NFL player survives, the quicker he dies. In his first 14 pro seasons, Seau missed only 9 games.
If Seau’s parents decide not to donate his brain for research, we may never know with certainty whether he suffered from Chronic Traumatic Encephalopathy. One thing is for sure, there’s something about playing in the NFL that doesn’t bode well for one’s life trajectory. Are repeated head hits causing organic damage to the brain, after which depression is the next domino to fall? Or perhaps, as in Easterling’s case, organic brain damage brings on intolerable shifts in personality and cognitive functioning, but in an unkind twist, leaves one with just enough insight to see what lies ahead. Roger Goodell has made great strides since becoming NFL commissioner in 2006, introducing preseason baseline concussion testing, for example, not to mention the unprecedented smackdown of the Saints players implicated in the bounty scandal earlier this month. His work is far from finished.
Jennifer Hartman, guest blogger
Add former Washington Redskins quarterback Mark Rypien and 125 other former professional football players to the list of people now suing the NFL. On March 23, a class-action lawsuit in which Rypien is the lead plaintiff was filed in the U.S. District Court of the Eastern District of Pennsylvania. According to court documents, the lawsuit alleges that the NFL “deliberately ignored and actively concealed” the dangers and risks of “repetitive traumatic brain injuries and concussions for decades”.
Canadian-born Rypien, now 49, quarterbacked for the Redskins from 1986 until 1993. The suit alleges that Rypien suffered multiple concussions and head injuries during his time with the Redskins, and as a result, he now suffers from “various neurological conditions and symptoms”. The plaintiffs are seeking “medical monitoring, as well as compensation and financial recovery” for the long-term and chronic “injuries, financial losses, expenses and intangible losses”.
This class-action lawsuit is not an aberration; NFLConcussionLitigation.com lists 51 suits against the NFL, representing more than 1,000 former players. Just six weeks ago, the family of former Chicago Bears star Dave Duerson filed a wrongful death suit against the NFL claiming the league did not do enough to prevent or treat the concussions that severely damaged Duerson’s brain. In February 2011, Duerson died of a self-inflicted gunshot wound to the chest, having left a suicide note pleading to have his brain donated to researchers at the Boston University School of Medicine Center for the Study of Traumatic Encephalopathy. The attorney representing Duerson’s family said the NFL should have been a leader in educating current and former players about head injuries.
Rypien’s lawsuit comes on the heels of the NFL’s investigation of allegations that the New Orleans Saints and other teams had ‘bounty programs’ which offered cash bonuses to players for injuring specific opponents. In response, NFL Commissioner Roger Goodell suspended Saints coach Sean Payton for one year, without pay. General Manager Mickey Loomis was suspended for eight games, assistant coach Joe Vitt was suspended for six games and former defensive coach Gregg Williams (who left the Saints to join the St. Louis Rams) has been suspended indefinitely. On Friday, Loomis, Vitt and Payton announced that they are appealing their suspensions. The NFL has indicated that as many as 27 players may have been involved in the bounty scandal, although at the time of publication, none have been sanctioned.
Jennifer Hartman, guest blogger