People with dementia aren’t currently eligible for voluntary assisted dying. Should they be?
10almonds is reader-supported. We may, at no cost to you, receive a portion of sales if you purchase a product through a link in this article.
Dementia is the second leading cause of death for Australians aged over 65. More than 421,000 Australians currently live with dementia and this figure is expected to almost double in the next 30 years.
There is ongoing public discussion about whether dementia should be a qualifying illness under Australian voluntary assisted dying laws. Voluntary assisted dying is now lawful in all six states, but is not available for a person living with dementia.
The Australian Capital Territory has begun debating its voluntary assisted dying bill in parliament but the government has ruled out access for dementia. Its view is that a person should retain decision-making capacity throughout the process. But the bill includes a requirement to revisit the issue in three years.
The Northern Territory is also considering reform and has invited views on access to voluntary assisted dying for dementia.
Several public figures have also entered the debate. Most recently, former Australian Chief Scientist, Ian Chubb, called for the law to be widened to allow access.
Others argue permitting voluntary assisted dying for dementia would present unacceptable risks to this vulnerable group.
Australian laws exclude access for dementia
Current Australian voluntary assisted dying laws exclude access for people who seek to qualify because they have dementia.
In New South Wales, the law specifically states this.
In the other states, this occurs through a combination of the eligibility criteria: a person whose dementia is so advanced that they are likely to die within the 12 month timeframe would be highly unlikely to retain the necessary decision-making capacity to request voluntary assisted dying.
This does not mean people who have dementia cannot access voluntary assisted dying if they also have a terminal illness. For example, a person who retains decision-making capacity in the early stages of Alzheimer’s disease with terminal cancer may access voluntary assisted dying.
What happens internationally?
Voluntary assisted dying laws in some other countries allow access for people living with dementia.
One mechanism, used in the Netherlands, is through advance directives or advance requests. This means a person can specify in advance the conditions under which they would want to have voluntary assisted dying when they no longer have decision-making capacity. This approach depends on the person’s family identifying when those conditions have been satisfied, generally in consultation with the person’s doctor.
Another approach to accessing voluntary assisted dying is to allow a person with dementia to choose to access it while they still have capacity. This involves regularly assessing capacity so that just before the person is predicted to lose the ability to make a decision about voluntary assisted dying, they can seek assistance to die. In Canada, this has been referred to as the “ten minutes to midnight” approach.
But these approaches have challenges
International experience reveals these approaches have limitations. For advance directives, it can be difficult to specify the conditions for activating the advance directive accurately. It also requires a family member to initiate this with the doctor. Evidence also shows doctors are reluctant to act on advance directives.
Particularly challenging are scenarios where a person with dementia who requested voluntary assisted dying in an advance directive later appears happy and content, or no longer expresses a desire to access voluntary assisted dying.
Allowing access for people with dementia who retain decision-making capacity also has practical problems. Despite regular assessments, a person may lose capacity in between them, meaning they miss the window before midnight to choose voluntary assisted dying. These capacity assessments can also be very complex.
Also, under this approach, a person is required to make such a decision at an early stage in their illness and may lose years of otherwise enjoyable life.
Some also argue that regardless of the approach taken, allowing access to voluntary assisted dying would involve unacceptable risks to a vulnerable group.
More thought is needed before changing our laws
There is public demand to allow access to voluntary assisted dying for dementia in Australia. The mandatory reviews of voluntary assisted dying legislation present an opportunity to consider such reform. These reviews generally happen after three to five years, and in some states they will occur regularly.
The scope of these reviews can vary and sometimes governments may not wish to consider changes to the legislation. But the Queensland review “must include a review of the eligibility criteria”. And the ACT bill requires the review to consider “advanced care planning”.
Both reviews would require consideration of who is able to access voluntary assisted dying, which opens the door for people living with dementia. This is particularly so for the ACT review, as advance care planning means allowing people to request voluntary assisted dying in the future when they have lost capacity.
This is a complex issue, and more thinking is needed about whether this public desire for voluntary assisted dying for dementia should be implemented. And, if so, how the practice could occur safely, and in a way that is acceptable to the health professionals who will be asked to provide it.
This will require a careful review of existing international models and their practical implementation as well as what would be feasible and appropriate in Australia.
Any future law reform should be evidence-based and draw on the views of people living with dementia, their family caregivers, and the health professionals who would be relied on to support these decisions.
Ben White, Professor of End-of-Life Law and Regulation, Australian Centre for Health Law Research, Queensland University of Technology; Casey Haining, Research Fellow, Australian Centre for Health Law Research, Queensland University of Technology; Lindy Willmott, Professor of Law, Australian Centre for Health Law Research, Queensland University of Technology, Queensland University of Technology, and Rachel Feeney, Postdoctoral research fellow, Queensland University of Technology
This article is republished from The Conversation under a Creative Commons license. Read the original article.
Don’t Forget…
Did you arrive here from our newsletter? Don’t forget to return to the email to continue learning!
Recommended
Learn to Age Gracefully
Join the 98k+ American women taking control of their health & aging with our 100% free (and fun!) daily emails:
-
The Epigenetics Revolution – by Dr. Nessa Carey
10almonds is reader-supported. We may, at no cost to you, receive a portion of sales if you purchase a product through a link in this article.
If you enjoyed the book “Inheritance” that we reviewed a couple of days ago, you might love this as a “next read” book. But you can also just dive straight in here, if you like!
This one, as the title suggests, focuses entirely on epigenetics—how our life events can shape our genetic expression, and that of our descendants. Or to look at it in the other direction, how our genetic expression can be shaped by the life experiences of, for example, our grandparents.
The style of this book is very much pop-science, but contains a lot of information from hard science throughout. We learn not just about longitudinal population studies as one might expect, but also about the intricacies of DNA methylation and histone modifications, for example.
Depending on your outlook, you may find some of this very bleak (“great, I am shackled by what my grandparents did”) or very optimism-inducing (“oh wow, I’m not nearly so constrained by genetics as I thought; this stuff is so malleable!”). This is also the same author who wrote “Hacking The Code of Life“, by the way, but we’ll review that another day.
Bottom line: this book is the best one-shot primer on epigenetics that this reviewer has read (you may be wondering how many that is, and the answer is… about seven or so? I’m not good at counting).
Click here to check out The Epigenetics Revolution, and learn how dynamic you really are!
Share This Post
-
Traveling To Die: The Latest Form of Medical Tourism
10almonds is reader-supported. We may, at no cost to you, receive a portion of sales if you purchase a product through a link in this article.
In the 18 months after Francine Milano was diagnosed with a recurrence of the ovarian cancer she thought she’d beaten 20 years ago, she traveled twice from her home in Pennsylvania to Vermont. She went not to ski, hike, or leaf-peep, but to arrange to die.
“I really wanted to take control over how I left this world,” said the 61-year-old who lives in Lancaster. “I decided that this was an option for me.”
Dying with medical assistance wasn’t an option when Milano learned in early 2023 that her disease was incurable. At that point, she would have had to travel to Switzerland — or live in the District of Columbia or one of the 10 states where medical aid in dying was legal.
But Vermont lifted its residency requirement in May 2023, followed by Oregon two months later. (Montana effectively allows aid in dying through a 2009 court decision, but that ruling doesn’t spell out rules around residency. And though New York and California recently considered legislation that would allow out-of-staters to secure aid in dying, neither provision passed.)
Despite the limited options and the challenges — such as finding doctors in a new state, figuring out where to die, and traveling when too sick to walk to the next room, let alone climb into a car — dozens have made the trek to the two states that have opened their doors to terminally ill nonresidents seeking aid in dying.
At least 26 people have traveled to Vermont to die, representing nearly 25% of the reported assisted deaths in the state from May 2023 through this June, according to the Vermont Department of Health. In Oregon, 23 out-of-state residents died using medical assistance in 2023, just over 6% of the state total, according to the Oregon Health Authority.
Oncologist Charles Blanke, whose clinic in Portland is devoted to end-of-life care, said he thinks that Oregon’s total is likely an undercount and he expects the numbers to grow. Over the past year, he said, he’s seen two to four out-of-state patients a week — about one-quarter of his practice — and fielded calls from across the U.S., including New York, the Carolinas, Florida, and “tons from Texas.” But just because patients are willing to travel doesn’t mean it’s easy or that they get their desired outcome.
“The law is pretty strict about what has to be done,” Blanke said.
As in other states that allow what some call physician-assisted death or assisted suicide, Oregon and Vermont require patients to be assessed by two doctors. Patients must have less than six months to live, be mentally and cognitively sound, and be physically able to ingest the drugs to end their lives. Charts and records must be reviewed in the state; neglecting to do so constitutes practicing medicine out of state, which violates medical licensing requirements. For the same reason, the patients must be in the state for the initial exam, when they request the drugs, and when they ingest them.
State legislatures impose those restrictions as safeguards — to balance the rights of patients seeking aid in dying with a legislative imperative not to pass laws that are harmful to anyone, said Peg Sandeen, CEO of the group Death With Dignity. Like many aid-in-dying advocates, however, she said such rules create undue burdens for people who are already suffering.
Diana Barnard, a Vermont palliative care physician, said some patients cannot even come for their appointments. “They end up being sick or not feeling like traveling, so there’s rescheduling involved,” she said. “It’s asking people to use a significant part of their energy to come here when they really deserve to have the option closer to home.”
Those opposed to aid in dying include religious groups that say taking a life is immoral, and medical practitioners who argue their job is to make people more comfortable at the end of life, not to end the life itself.
Anthropologist Anita Hannig, who interviewed dozens of terminally ill patients while researching her 2022 book, “The Day I Die: The Untold Story of Assisted Dying in America,” said she doesn’t expect federal legislation to settle the issue anytime soon. As the Supreme Court did with abortion in 2022, it ruled assisted dying to be a states’ rights issue in 1997.
During the 2023-24 legislative sessions, 19 states (including Milano’s home state of Pennsylvania) considered aid-in-dying legislation, according to the advocacy group Compassion & Choices. Delaware was the sole state to pass it, but the governor has yet to act on it.
Sandeen said that many states initially pass restrictive laws — requiring 21-day wait times and psychiatric evaluations, for instance — only to eventually repeal provisions that prove unduly onerous. That makes her optimistic that more states will eventually follow Vermont and Oregon, she said.
Milano would have preferred to travel to neighboring New Jersey, where aid in dying has been legal since 2019, but its residency requirement made that a nonstarter. And though Oregon has more providers than the largely rural state of Vermont, Milano opted for the nine-hour car ride to Burlington because it was less physically and financially draining than a cross-country trip.
The logistics were key because Milano knew she’d have to return. When she traveled to Vermont in May 2023 with her husband and her brother, she wasn’t near death. She figured that the next time she was in Vermont, it would be to request the medication. Then she’d have to wait 15 days to receive it.
The waiting period is standard to ensure that a person has what Barnard calls “thoughtful time to contemplate the decision,” although she said most have done that long before. Some states have shortened the period or, like Oregon, have a waiver option.
That waiting period can be hard on patients, on top of being away from their health care team, home, and family. Blanke said he has seen as many as 25 relatives attend the death of an Oregon resident, but out-of-staters usually bring only one person. And while finding a place to die can be a problem for Oregonians who are in care homes or hospitals that prohibit aid in dying, it’s especially challenging for nonresidents.
When Oregon lifted its residency requirement, Blanke advertised on Craigslist and used the results to compile a list of short-term accommodations, including Airbnbs, willing to allow patients to die there. Nonprofits in states with aid-in-dying laws also maintain such lists, Sandeen said.
Milano hasn’t gotten to the point where she needs to find a place to take the meds and end her life. In fact, because she had a relatively healthy year after her first trip to Vermont, she let her six-month approval period lapse.
In June, though, she headed back to open another six-month window. This time, she went with a girlfriend who has a camper van. They drove six hours to cross the state border, stopping at a playground and gift shop before sitting in a parking lot where Milano had a Zoom appointment with her doctors rather than driving three more hours to Burlington to meet in person.
“I don’t know if they do GPS tracking or IP address kind of stuff, but I would have been afraid not to be honest,” she said.
That’s not all that scares her. She worries she’ll be too sick to return to Vermont when she is ready to die. And, even if she can get there, she wonders whether she’ll have the courage to take the medication. About one-third of people approved for assisted death don’t follow through, Blanke said. For them, it’s often enough to know they have the meds — the control — to end their lives when they want.
Milano said she is grateful she has that power now while she’s still healthy enough to travel and enjoy life. “I just wish more people had the option,” she said.
KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.
Subscribe to KFF Health News’ free Morning Briefing.
Share This Post
-
These Signs Often Mean These Nutrient Deficiencies (Do You Have Any?)
10almonds is reader-supported. We may, at no cost to you, receive a portion of sales if you purchase a product through a link in this article.
These are not a necessary “if this then this” equation, but rather a “if this, then probably this”, and it’s a cue to try upping that thing in your diet, and if that doesn’t quickly fix it, get some tests done:
- White bumps on the skin: vitamin A, omega 3
- Craving sour foods: vitamin C
- Restless leg syndrome: iron, magnesium
- Cracked lips: vitamin B2
- Tingling hands and feet: vitamin B12
- Easy bruising: vitamin K and vitamin C
- Canker sores: vitamin B9 (folate), vitamin B12, iron
- Brittle or misshapen nails: vitamin B7 (biotin)
- Craving salty foods: sodium, potassium
- Prematurely gray hair: copper, vitamin B9 (folate), vitamin B12
- Dandruff: omega 3, zinc, vitamin B6
- Craving ice: iron
Dr. LeGrand Peterson has more to say about these though, as well as a visual guide to symptoms, so do check out the video:
Click Here If The Embedded Video Doesn’t Load Automatically!
Want to know more?
You might like this previous main feature about supplements vs nutrients from food
Do We Need Supplements, And Do They Work?
Enjoy!
Share This Post
Related Posts
-
An Important Way That Love Gets Eroded
10almonds is reader-supported. We may, at no cost to you, receive a portion of sales if you purchase a product through a link in this article.
It is unusual for a honeymoon period to last forever, but some relationships fair a lot better than others. Not just in terms of staying together vs separating, but in terms of happiness and satisfaction in the relationship. What’s the secret? There are many, but here’s one of them…
Communication
In this video, the case is made for a specific aspect of communication: airing grievances.
Superficially, this doesn’t seem like a recipe for happiness, but it is one important ingredient—that it’s dangerously easy to let small grievances add up and eat away at one’s love and patience, until one day resentment outweighs attachment, and at that point, it often becomes a case of “checking out before you leave”, remaining in the relationship more due to inertia than volition.
Which, in turn, will likely start to cause resentment on the other side, and eventually things will crumble and/or explode.
In contrast, if we make sure to speak our feelings clearly (10almonds note, not in the video: we think that doing so compassionately is also important), the bad as well as the good, then it means that:
- things don’t stack up and fester (there will less likely be a “final straw” if we are regularly removing straws)
- there is an opportunity for change (in contrast, our partner would be unlikely to adjust anything to correct a problem they don’t know about)
- all but the most inclined-to-anxiety partners can rest easy, because they know that if we had a problem, we’d tell them
This is definitely only one critical aspect of communication; this video for example says nothing about actually being affectionate with one’s partner, or making sure to accept emotional bids for connection (per that story that goes “I knew my marriage was over when he wouldn’t come look at the tomatoes I grew”), but it is one worth considering—even if we at 10almonds would advise being gentle yet honest, and where possible balancing, in aggregate if not in the moment, with positive things (per Gottman’s ratio of 5:1 good moments to bad, being the magic number for marriages that “work”).
For more on why it’s so important to be able to safely air grievances, see:
Click Here If The Embedded Video Doesn’t Load Automatically!
Want to learn more?
You might also like to read:
Seriously Useful Communication Skills! ← this deals with some of the important gaps left by the video
Take care!
Don’t Forget…
Did you arrive here from our newsletter? Don’t forget to return to the email to continue learning!
Learn to Age Gracefully
Join the 98k+ American women taking control of their health & aging with our 100% free (and fun!) daily emails:
-
Fruit & Veg In The Fridge: Pros & Cons
10almonds is reader-supported. We may, at no cost to you, receive a portion of sales if you purchase a product through a link in this article.
It’s Q&A Day at 10almonds!
Have a question or a request? We love to hear from you!
In cases where we’ve already covered something, we might link to what we wrote before, but will always be happy to revisit any of our topics again in the future too—there’s always more to say!
As ever: if the question/request can be answered briefly, we’ll do it here in our Q&A Thursday edition. If not, we’ll make a main feature of it shortly afterwards!
So, no question/request too big or small
❝What effect does refrigeration have on the nutritional value of fruit and vegetables??❞
It’s difficult to give a single definitive answer, because naturally there are a lot of different fruits and vegetables, and a lot of different climates. The answer may be different for tomatoes in Alaska vs bananas in Arizona!
However, we can still generalize at least somewhat
Refrigeration will generally slow down any degradation process, and in the case of fruit and vegetables, that can mean slowing down their “ripening” too, as applicable.
However…
Refrigeration will also impede helpful bioactivity too, and that includes quite a list of things.
Here’s a good study that’s quite illustrative; we’d summarize the conclusions but the rather long title already does that nicely:
So, this really is a case of “there are pros and cons, but probably more cons on balance”.
In practical terms, a good take-away from this can be twofold:
- don’t keep fruit and veg in the fridge unless the ambient temperature really requires it
- if the ambient temperature does require it, it’s best to get the produce in fresh each day if that’s feasible, to minimize time spent in the fridge
An extra thing not included there: often when it comes to the spoilage of fruit and veg, the problem is that it respires and oxidizes; reducing the temperature does lower the rate of those, but often a far better way is to remove the oxygen. So for example, if you get carried away and chop too many carrot batons for your hummus night, then putting them in a sealed container can go a long way to keeping them fresh.
See also: How Does the Nutritional Value of Fruits and Vegetables Change Over Time?
Enjoy!
Don’t Forget…
Did you arrive here from our newsletter? Don’t forget to return to the email to continue learning!
Learn to Age Gracefully
Join the 98k+ American women taking control of their health & aging with our 100% free (and fun!) daily emails:
-
Dealing With Hearing Loss
10almonds is reader-supported. We may, at no cost to you, receive a portion of sales if you purchase a product through a link in this article.
Hearing is important, not only for convenience, but also for cognitive health—as an inability to participate in what for most people is an important part of social life, has been shown to accelerate cognitive decline:
14 Powerful Strategies To Prevent Dementia ← one of them is looking after your hearing
To this end, we’ve written before about ways to retain (or at least slow the loss of) your hearing, here:
But, what if, despite our best efforts, your hearing is declining regardless, or is already impaired in some way?
Working with the hand we’ve been dealt
So, your hearing is bad and/or deteriorating. Assuming you’ve ruled out possibilities of fixing it, the next step is how to manage this new state of affairs.
One thing to seriously consider, sooner than you think you need to, is using hearing aids. This is because they will not only help you in the obvious practical way, but also, they will slow the associated decline of the parts of your brain that process the language you hear:
ACHIEVE study finds hearing aids cut cognitive decline by 48%
…and here’s the paper itself:
Furthermore, hearing aid use can significantly reduce all-cause mortality:
Your ears are not the only organs
Remember, today’s about dealing with hearing loss, not preventing it (for preventing it, see the second link we dropped up top).
With this in mind: do not underestimate the usefulness of learning to lipread.
Lipreading is not a panacea; it has its limitations:
- You can’t lipread an audio-only phonecall, or a podcast, or the radio
- You can’t lipread a video call if the video quality is poor
- You can’t lipread if someone is wearing a mask (as in many healthcare settings)
- You can’t lipread multiple people at once; you have to choose whose mouth to watch (or at least, you will miss the first word(s) each time while switching)
- You can’t lipread during sex if your/their face is somewhere else (may seem like a silly example, but actually communication can be important in sex, and the number of times this writer has had to say “Say again?” in intimate moments is ridiculous)
However, it can also make a huge difference the rest of the time, and can even be a superpower in times/places when other people’s hearing is nullified, such as a noisy environment, or a video call in which someone’s mic isn’t working.
The good news is, it’s really very easy to learn to lipread. There are many valid ways (often involving consciously memorizing mouth-shapes from charts, and then putting them together one by one to build a vocabulary), but this writer recommends a more organic, less effort-intensive approach:
- Choose a video of someone who speaks clearly, and for which video you already know what is being said (such as by using subtitles first, or a transcript, or perhaps the person is delivering a famous speech or reciting a poem that you know well, or it’s your favorite movie that you’ve watched many times).
- Now watch it with the sound off (assuming you do normally have some hearing; if you don’t, then you’re probably ahead of the game here) and just pay close attention to the lips. Do this on repeat; soon you’ll be able to “hear” the sounds as you see them made.
- Now choose a video of someone who speaks clearly, for which video you do not already know what is being said. You’ll probably only get parts of it at first; that’s ok.
- Now learn the rest of what they said in that video (by reading a transcript or such), and use it like you used the first video.
- Now repeat steps 3 and 4 until you are lipreading most people easily unless there is some clear obfuscation preventing you.
This process should not take long, as there are only about 44 phonemes (distinct sounds) in English, and once you’ve learned them, you’re set. If you speak more languages, those same 44 phonemes should cover most of most of them, but if not, just repeat the above process with the next language.
Remember, if you have at least some hearing, then most of the time your lipreading and your hearing are going to be working together, and neither will be as strong without the other—but if necessary, well-practised lipreading can indeed often stand in for hearing when hearing isn’t available.
A note on sign language:
Sign language is great, and cool, and useful. However, it’s only as useful as the people who know it, which means that it’s top-tier in the Deaf community (where people will dodge hearing-related cognitive decline entirely, because their social interaction is predominantly signed rather than spoken), and can be useful with close friends or family members who learn it (or at least learn some), but isn’t as useful in most of the wider world when people don’t know it. But if you do want to learn it, don’t let that hold you back—be the change you want to see!
Most of our readers are American, so here’s a good starting place for American Sign Language ← this is a list of mostly-free resources
Enjoy!
Don’t Forget…
Did you arrive here from our newsletter? Don’t forget to return to the email to continue learning!
Learn to Age Gracefully
Join the 98k+ American women taking control of their health & aging with our 100% free (and fun!) daily emails: