How to Properly Prepare for End of Life Care

Sometimes death comes like a thief in the night. Other times, there’s a slow and clear buildup. In the latter scenario, one of the benefits – if you can even call it that – is that you have time to prepare for the end of your life.

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Preparing for Your Final Chapter

At some point, it may become clear that whatever healthcare, treatments, medication, or procedures you’re pursuing to prolong your life are no longer effective. You may also come to realize that they’re doing more harm than good – robbing you of the opportunity to enjoy what time is left. When these revelations become clear, the best thing you can do is stop and focus on your quality of life.

As sobering as it is to accept, you will eventually pass on. And either you pass on without any purpose or plan – leaving the burden to your loved ones – or you can take the time to prepare for the end of your life and, in the process, provide a greater sense of closure for everyone involved.

Everyone’s end of life care situation will be different, but here are some suggestions to help you approach this sensitive and emotional time with poise:

1. Have Important Conversations

The first step is to have the right conversations with the right people. When you decide to stop seeking treatment or pursuing certain healthcare options that are designed to extend your life, it’s important that people know.

Your family needs to know that you’re dying – not so that they can feel sorry for you, but so that they may process it in a healthy manner. These conversations are more for your loved ones than they are for you. Set aside some time to speak with parents, siblings, grandchildren, close friends, mentors, etc. You don’t have to be overly sentimental or wise – just be yourself. Honesty will go a long way.

2. Make Your Wishes Known

Now’s the time to make your wishes known. If you’re currently in a nursing home, hospital, or another care facility, it may be wise to move back home. This will lessen your chances of receiving poor care from a staff that may neglect certain important needs. Instead, you can receive personalized care from your loved ones (who are more likely to respect your wishes).

If you haven’t already done so, now’s also a good time to designate a trusted loved one to make medical decisions on your behalf.

“This person, called your healthcare proxy or medical power-of-attorney, is the person who you know will make decisions the way you want them made and who can most easily stand at your bedside, if necessary,” patient advocate Trisha Torrey writes. “Your proxy will need to make decisions for you if you are in a coma, have a sudden heart attack or stroke, experience another debilitating event, and can’t speak. In addition to your primary representative, you’ll want to designate who your second choice representative should be.”

If there are specific details that are important to you, make these clear as well. For example, some people only want certain individuals present when the time comes for them to die. Other people don’t care. Speak your mind now so that you have the chance to die on your terms.

3. Get Financial Matters in Order

Hopefully you already have a last will and testament drafted. If you don’t, go ahead and do so. This will allow you to direct your finances and assets to the right people. It also saves your heirs from having to deal with the legal fallout of an estate that hasn’t been properly accounted for.

4. Secure the Right Burial Arrangements

Finally, be sure that you establish and document your burial arrangements prior to your passing. This is one less thing your family has to worry about. It gives them the opportunity to grieve properly, rather than hurrying around to figure out administrative details.

Leaving With Grace and Dignity

You will leave a legacy when you die. Whether this legacy is positive or negative remains to be seen. By preparing for the end of your life with purpose and dignity, you’ll increase the chances of passing on a legacy that people are happy to attach themselves to. Take some time to think about your wishes and how they can be executed tastefully.

Complete Article HERE!

‘Cake’ Will Sweeten the Process of Dying in the Digital Age

These days, your last will and testament needs to cover more than just who gets your money and random tchotchkes. Cake takes a no-nonsense and pleasant approach to planning your inevitable demise; no gloom and doom here. Founder Suelin Chen explains.

By S.C. Stuart

A few years ago, ahead of a scheduled operation, I had to hire an attorney to draw up my last will and testament. Per the hospital’s instructions, I was also told to bring a copy of my Advance Directive, or instructions on when to pull the plug. It was scary, grown-up stuff.

As a digital native, it all felt a bit too real. I would have much preferred to sit on my couch, laptop at the ready, with an on-screen AI to talk me through the whole decision-making process and pop it up on the cloud. And that’s exactly what former healthcare executive Suelin Chen built in her Boston-based startup, Cake.

Aware that no one is thrilled about planning for the final exit—or having to talk loved ones through their own wishes—Cake is a no-nonsense online tool. You can lay out: how you’d like to go (hospice versus at home or maybe a remote cabin in the woods); who gets your stuff; the music you’d like at your memorial; and more.

You can also specify how you want to be remembered digitally. Perhaps you want to allocate funds for annual site management fees, domain registration, or deputizing someone to ensure a Wiki-profile is factually accurate.

I spoke to Chen to find out more. Here are edited and condensed excerpts from our conversation.

Suelin, how did you come up for the idea behind Cake?
With my background in healthcare and business, I saw not only the high costs involved in end-of-life care, but that in our country people often default to enduring more and more medical procedures without fully understanding the value, or the trade-offs. Three out of four people don’t plan for end-of-life, and I get why—the barriers to planning can be really high. Simply put, I saw an opportunity to help people plan better, to make their desires known, before it’s too late.

Because they’re too incapacitated to make their views known?
Right, it’s often brought up too late. Because, when surveyed, 80 percent of people would prefer to die at home—and yet, today, 80 percent of people die in medical facilities.

Planning for the final exit is a space ripe for disruption, then.
I knew there could be good digital tools for doing this but I couldn’t find any, so I found a great team and built Cake.

Is there also a generational shift? Due to social media, we get to ‘see’ people die, many of whom we might have lost touch with over the years. Death is going to happen to us all. But it feels more ‘visible’ now.
Absolutely. We have a lot of millennials on our platform, and we see that this generation is very pragmatic and perceives less stigma about death than older generations. Previous generations have been remembered through a gravestone or something similar. In time, those degrade. But our digital footprint, the traces of our lives, will persist online. I ask people, when your great-grandchildren search online for you in the future, what do you want them to find?

That’s a deeply unsettling and yet curiously interesting thought. You must have worked with many different partners to bring Cake to life.
Yes, we’ve spent hundreds of hours consulting with experts to develop all our online tools including: estate attorneys, funeral planners, physicians, social workers, and wealth managers.

How does Cake work? This is more than a basic will, right?
Yes, many of our users have done estate planning and have a will but realize that they still have gaps. We provide a personalized, comprehensive, and detailed checklist that helps people understand what planning they still need to do. It’s hard to know what legal fees are reasonable, because there’s a lack of transparency. Many of our users have seen an attorney but want more visibility into the process. It’s not just avoiding taxes on your assets after death (though of course this is very important). It’s also managing how you want to be remembered, your funeral or memorial service, your digital footprint, your digital assets (Bitcoin, etc.)—certainly doing more than putting all your passwords in an Excel doc and locking it (which has been recommended to several of our users).

How many data points is your AI gathering as it takes a Cake user through personal planning?
It’s fluid [and] really depends on the individual. Our Cake AI prompts you with questions, to capture data around many decisions that need to be made. But there’s also a freeform section for more personal wishes. Some of our users write (almost) novel-length answers to those.

What are some of the more ‘out there’ requests?
Well, every employee at Cake has gone through the process and one of my team members loves the idea of having a tree planted for him. A lot of our users, including me, feel they’d rather have a celebration of life than a somber funeral. One of our users wants to be buried with a 6-pack of Bud Lite. Someone else I know has left instructions to rent out a movie theater for his. Your last wishes should be a true expression of who you are.

How many people have signed up so far?
We don’t reveal exact user numbers.

Fair enough. It’s free to users, so what’s your revenue model?
We make money from affiliate links and from enterprise partners who distribute to their population. For example, we’ve built a Cake back-end for a large healthcare provider, an insurer, a bank, and other institutions. A premium product is also in the works.

You don’t share data with ‘interested parties’ who might want to sell fancy urns then?
No, trust is the most important thing to us. We will never sell or share personally identifiable information with any third party without our users consent.

Why the name Cake?
It’s a warm, inviting symbol of celebrating and honoring life. Planning is a positive act, a true gift to your loved ones.

You’ve build a web-based service, rather than a mobile app. Why?
It’s much faster to iterate and improve the platform, and doesn’t require any download. We also know that many of our user base is more comfortable with web apps than downloading native applications.

Do you have a tech team in-house or are you partnering with a digital agency on this build?
All in house! We actually have more female than male techies, who span several generations, which I’m very proud of.

Are you wedded to any particular tech tools?
Choosing Microsoft Azure as our hosting platform made it easy for us to implement excellent security and scalability for our product early on, and our code base heavily utilizes the Microsoft .NET stack as well. We recently also switched our internal IT to Office 365 and were early adopters of Microsoft Teams; so I guess we’re fans of Microsoft technologies.

Why are you based in Boston rather than any of the other Silicon cities?
I love Boston. There’s a lot of activity in FinTech, MedTech, and healthcare here. It’s a great place to be, with plenty of talent and financial support from big institutions.

Talking of support, who are your backers?
We raised pre-seed from Pillar VC, LaunchCapital, Arkitekt Ventures, and Honeycomb.

Finally, what’s next for you?
We have an exciting growth plan for 2019, and a number of new partners in the financial sector that will provide new avenues for growth and new opportunities to add features that enable our users to plan and have peace of mind. Cake is in the FinTech cohort of Mass Challenge 2019, which kicks off orientation on Jan. 18. The initiative is aimed at startups which have an enterprise-ready solution, and helps them partner with large organizations. Cake will be working with MassMutual, Fidelity, and AARP Innovation Labs.

Complete Article HERE!

As baby boomers age, ‘we are in for a death boom.’

Grief expert urges support for mourning workers.

Bobbi Manka, right, works with her colleague Jen Gallois, left, at Tyson Fresh Meats on Dec. 11, 2018, in Elgin. Manka’s co-workers helped her following the death of her husband, Dan Manka, in January 2016.

By Alexia Elejalde-Ruiz

Bobbi and Daniel Manka were settling into bed after a night out dancing when Daniel stood up, clutched his chest and gasped, “911.”

Just like that, Bobbi Manka lost her husband of 44 years and gained “a hole in my heart that will never be replaced.”

But she has found comfort where she didn’t know she would: at work.

Grief after the death of a loved one inevitably follows people to work, where employers and co-workers often are unprepared to handle the immediate sorrow or the surges of pain that ambush mourners at milestones like birthdays and holidays.

Some of the shortcomings can be linked to insufficient bereavement leave policies, but often what fails is the human response to a suffering colleague.

“We have become an increasingly death-denying society,” said Amy Florian, CEO of Corgenius, a Hoffman Estates-based organization that trains businesses on how to help grieving clients and employees. “And when we don’t talk about it, we don’t know how to do it well: how to accompany people through grief.”

Florian said employers would be wise to prepare for the impact of grief on business as aging baby boomers, who are staying in the workplace longer, move toward the end of life.

“We are in for a death boom, we are in for a dementia boom,” said Florian, a fellow in thanatology, the study of death and bereavement. “All of these things are going to happen but firms are not prepared for it.”

Being prepared includes understanding that grieving individuals will cope differently, and employers should accommodate their unique needs, Florian said.

Nearly 90 percent of employers say they offer paid bereavement leave — usually three days for an immediate family member — but that’s not nearly enough time for many people, especially when the death is sudden, she said. Employers might want to consider more generous policies as well as expand them to accommodate deaths beyond immediate family, as losing an aunt or friend can be just as devastating if the relationship was close, Florian said.

No federal law requires employers to give workers time off to grieve, though Illinois has a law, which went into effect two years ago, that provides up to 10 working days of unpaid leave for the death of a child at companies with at least 50 employees.

Florian said employers also should not expect grief-stricken employees to function normally when they return to work, as their concentration is shot, their minds are disorganized and they may be prone to making mistakes. Some employees will need additional support for a month or two once they’re back on the job, such as flexible work schedules, more breaks, adjusted expectations and someone to catch errors, with the assurance that their performance reviews won’t suffer, she said.

Educating co-workers on how to best support a grieving colleague can also help. Many people fumble awkwardly as they try to express sympathy, or avoid the topic altogether because they don’t know what to say, Florian said.

“What is often very shocking for people to learn is that ‘I am so sorry’ is not the best thing to say when someone dies,” Florian said. “The focus is all wrong, it’s on the comforter and not the griever.” Better to ask about the person who died — what they were like, how it happened, making sure to use his or her name, she said. If someone doesn’t want to talk about it, they will close the door on the conversation, she said.

Bobbi Manka pokes her head into Scott Leckrone’s office at Tyson Fresh Meats on Dec. 11, 2018 in Elgin. Leckrone, Manka’s boss, and other colleagues provided emotional support to Manka after her husband died in January 2016.

Manka, 64, who lives in Genoa, a town about 65 miles northwest of Chicago, said she was surprised to discover how often people didn’t ask how she was doing after her husband died suddenly of a massive heart attack two years ago.

“They are afraid that they might trigger something and you might start crying,” she said. “Even if I did, it would have been a good thing.”

But Manka, an administrative assistant in the Tyson Foods sales office in Elgin, was pleasantly surprised at how her colleagues stepped up during her crisis, even though she’d worked at the company only two years at the time and no one from the office had met her husband — the kind of guy “who would take his shirt off and give it to anyone,” she said.

Her boss and a colleague not only attended his “celebration of life” but stayed through the event and got to know her family, she said. When her three days of bereavement leave were up and she couldn’t bring herself to return to work, she was given an extra week off unpaid. She was eager to return when she did.

“My world had been rocked so incredibly hard that coming back to work helped me, because the house was so empty,” Manka said. “Work was my safe place for a long time.”

As she struggled to adjust to her new reality, Manka sought counseling from Tyson’s chaplaincy program, a network of 100 chaplains employed by the company to help Tyson workers navigate life challenges. She found solace in the Bible verses she was given and the advice about how to help her children through their grief as she dealt with her own.

Small kindnesses in her office of 12 have made a big difference, she said. On Manka’s first birthday after her husband’s death, her co-workers presented her with a big cake and card, and told her “we want you to know you’re part of the family,” Manka said. On her wedding anniversary, or when anything happens that triggers memories, her boss can detect a shift in her mood and urges her to take a walk and clear her head.

Such accommodations pay off in the long term, Florian said.

“People who felt they were treated compassionately during times of grief are incredibly loyal to their employer,” she said.

Grief last year cost employers an estimated $113.27 billion in reduced productivity and on-the-job errors, a calculation that takes into account not only the deaths of loved ones but also other traumatic losses such as divorce or home foreclosures, according to the Grief Recovery Institute, an organization based in Bend, Ore., that trains therapists and counselors in grief recovery.

That estimate is up from $75 billion the last time the nonprofit released its Grief Index in 2002, a increase driven by inflation as well as changing workforce demographics as the population ages, said Operations Manager Ed Owens.

Yet employers are rarely proactive about addressing grief in the workplace, and typically only seek help when an employee has died and co-workers need support, said David Fireman, executive director of the Center for Grief Recovery and Therapeutic Services in Chicago’s Rogers Park neighborhood.

“If I had my druthers, (grief training) would be a built-in component to employee orientation,” Fireman said.

While the aging population is one source of workplace grief, another is the city’s violence. Fireman’s organization last year counseled students and faculty at the Chicago Waldorf School after a teacher at the school was killed by a stray bullet while she waited at a nearby Red Line station. He continues to be available to them because “grief is a process and there might be delayed reactions,” he said.

GrieveWell, a nonprofit in Ann Arbor, Mich., that provides grief training to employers and peer-to-peer support for grieving adults, is trying to raise the profile of grief as an “unspoken public health issue” with dangerous consequences if it is not addressed, said Amy Milanovich, former executive director.

Unresolved grief, a clinical term that refers to intense mourning that persists for a long time and interferes with daily functioning, has been linked to an increase in heart disease, stroke and cancer, she said.

The workplace has become increasingly important as a source of support as community traditions that used to surround people in mourning have been cut short amid a social expectation to get back to life as usual, she said.

“Everyone around is someone who could be in grief and everyone needs to be someone who can support them,” Milanovich said. In addition to conducting business lunch-and-learns on the topic, GrieveWell offers a deeper training in active listening for employees who want to be the designated ear colleagues turn to in time of need.

ComPsych, a Chicago-based provider of employee assistance programs, has seen a steady increase in crisis counseling calls about bereavement, likely because employers have become more aware of the need for mental health support, spokeswoman Jennifer Hudson said. Employees over 60 are the most likely of all age groups to seek bereavement help, the company’s data show.

Eric Freckman, a certified financial planner in Palatine, said grief training at his firm has led to improved relationships with clients, who often find themselves navigating unfamiliar bank accounts and investments when a spouse or parent passes away. Increasingly, grief strikes even before death as more people live longer with diminished capacity, he said.

People tend to make emotional decisions around money, especially when they’re grieving, so it takes empathy to guide them to the best decision, Freckman said.

“There’s the answer in Excel of what they should do,” he said. “But getting people to actually do that is very difficult.”

Financial adviser Eric Freckman, left, meets with Keith Leust, of Barrington, at the Guillaume & Freckman office on Dec. 27, 2018, in Palatine.

Freckman said he used to be “sort of terrified” of talking with clients about their loved one’s death, and would avoid it by sticking to discussing numbers. But after training with Florian at Corgenius he feels comfortable engaging in conversations about the loss — “How did you find out?” he asks. “What was it like for you?” “Are there phone calls we can make for you?” — and leaving the paperwork to later meetings. Ninety percent of clients want to talk, and the care shown has helped solidify trust, he said.

“We keep track of people’s birthdays, we try to call and let them know we’re thinking about them, that we know it’s a hard day, the first Christmas alone,” he said. “It’s all relatively simple stuff when you think about it.”

The simple stuff can make a big difference, Florian said. She knows from experience.

Florian was 25 and a new mom to a 7-month-old boy when her husband, John, went to a business meeting and never returned. A farm insurance agent, he was killed when his car was struck broadside on a rural Iowa road on a sleety February night.

“I felt like my future had simply evaporated in an instant,” Florian said. “And nobody knew what to say to me.”

Florian, a stay-at-home mom at the time, felt “every breath was different” after that day, as she adjusted to the empty pillow, the coffee for one, the realization that “anyone could die at any time.”

She felt alone as many people avoided talking about her husband after the funeral. She was grateful to those who did, especially when they said his name.

“It’s such a comfort to know that John’s life made a difference, that someone remembers besides me,” she said. “That his death left a void in the world, not just my life.”

Florian noticed the various ways well-meaning people’s support was insufficient. They’d ask if she needed anything, but she felt bad taking advantage of those offers, worried she’d be a burden. More helpful, she said, was when people identified what needed doing and offered to do it, such as shopping for groceries, weeding the garden or babysitting her son.

Florian recalls working with a financial professional who would change the subject when she started to tear up. So she was impressed when another financial planner, on their first meeting, looked at her file and said: “I see that you are widowed. Tell me about John.”

Her experience propelled her to get a graduate degree in pastoral studies and advanced certification in grief counseling, and she taught ministry courses on death and grieving at Loyola University for 11 years.

Decades after John’s death, Florian is remarried, and her sadness lives alongside her joy. She can still be sent into a sobbing fit in the grocery store aisle when she hears a certain song – and that’s OK.

“The point of healing is not to forget,” she said. “The point is to remember.”

Complete Article HERE!

End Of Life Planning:

It Won’t Kill You

By Sara Zeff Geber

If you are over 50 and reading this, you have probably done some end-of-life planning. No? Time to get to work. You made a will 15 years ago? Not good enough. If you haven’t done anything or haven’t reviewed your planning in over five years, read on.

The key components of end-of-life planning are:

  • A will
  • A power-of-attorney for finances
  • A power-of-attorney for health care
  • An advance directive for health care
  • A trust for your assets

I am not an attorney, so I am not going to go into any depth about these legal documents. My intention is to rouse your interest in doing end-of-life planning by telling you about some novel and inventive ways to enhance it. So, even if you have done the basic planning with your estate attorney and have the documents on record, there are some new and interesting twists today that you may want to know about.

Traditionally, when the topic of end-of life planning comes up, the first item that comes to mind for most people is a will. If you are just beginning this journey a will is a good place to start and you may not need an estate planning attorney to take this first step. There are a number of online tools today for building a will, and some of them are so robust you may only need a couple of witnesses rather than an attorney.

FreeWill.com is one of the newest players in this space. Founded at Stanford University and launched in 2017, FreeWill (in the company’s description) “provides high-quality, intuitive online estate planning tools at no cost to the consumer.”  The founders, Patrick Schmitt and Jenny Xia, are young entrepreneurs with experience in finance and technology.

Several years ago, Patrick, who has a background in nonprofit fundraising and technology for social impact, was about to travel to areas that were not particularly safe for Americans. He decided the prudent thing would be to make a will. In doing so, he discovered that the process was more complicated and difficult than it needed to be, especially if one wanted to include any kind of planned giving to a non-profit. That event became the impetus for starting his company, FreeWill.com.

FreeWill strongly supports the inclusion of planned giving and it is built in to their will-creation software. Through their own research, they have discovered that single people are more than twice as generous as any other group when writing a will and single people who choose to leave a bequest are the most generous (2.5 times more than married people). FreeWill reaches out to singles through their marketing and because I often write about solo agers they reached out to me to help them spread the word.

I tried the online will creation form and discovered it to be very simple and straightforward. It took me less than the 20 minutes they suggest. Once I had completed the online form, I had the option to print it. Printing is necessary because for a will to be legally binding it must be signed by the principal and also by two witnesses. Then it can be kept stored in a safe place, including cloud storage. For larger, more complex estates, FreeWill suggests pairing the effort with a visit to an attorney and they provide the forms for doing just that. FreeWill will be rolling out additional end-of-life forms. A health care directive and a durable power-of-attorney are in the works.

An often-overlooked piece of end-of-life planning is the disposition of your remains after you have passed. I think many people have an even harder time facing this question when they are still healthy and strong, but making these plans ahead of time is one of the kindest gestures you can make for the loved ones you leave behind.

When I was still in my teens, my divorced father, age 55, purchased a burial plot and picked out a casket. He wanted to take me to see the burial park and the plot. I resisted, but he eventually wore me down and we went to visit the cemetery. About 15 years later, he created very specific plans for where he wanted his memorial service and who should be invited. Again, I resisted his efforts to share these plans with me, but he insisted. In addition to telling me, in great detail, what he had in mind for the burial service and the memorial, he also showed me where he kept all his important papers and took me to the bank to show me how to open the safe-deposit box where he kept some gold coins and other valuables.

It upset me to think about him dying; he wasn’t sick at the time and I couldn’t figure out why he was making all these seemingly-premature plans. Of course, years later he did die and it was fairly sudden. Amidst the shock of his passing I realized I did not have to make any decisions; all I had to do was put his plans in motion. It was the greatest gift he could have given me.

My father chose to be buried.  Now, thirty years later, my husband and I have chosen cremation and having our ashes scattered at sea near our Northern California home. The Neptune Society and the Trident Society (both subsidiaries of Service Corporation International) have pre-need programs for cremation. There are other cremation programs, but these two have been around the longest and that seemed important for a decision like this. They both have 5-year financing plans and other payment options.

There is also a green burial option today that may be appealing to you if you are concerned about traditional burial’s impact on the environment and use of open space.

As with so many later-life concerns, baby boomers are changing the landscape at the end of life. I think we can expect to see many more new concepts arise in the next two decades as this large population cohort enters the final decades of life.

Complete Article HERE!

People with dementia and financial abuse

– the warning signs and how to avoid it

By

When most of us go online to our internet banking account and set up a direct debit to pay a bill, we probably do it swiftly without much thought. But in reality it’s not that easy. In fact, there are a lot of complex processes involved in how we manage our finances, which older people, especially those with dementia, often struggle to deal with.

Dementia affects an estimated 850,000 in the UK, with numbers expected to rise to over a million in the next few years. Each year, dementia care is costing £26.3 billion in the UK alone. Most of this involves care in nursing homes and supporting people with dementia with their daily activities.

If we look at the whole raft of daily activities a person does, such as preparing a hot drink or a meal, or doing the laundry, financial management is one of the earliest tasks to deteriorate in dementia. These processes are complex, which is why people with dementia often struggle to count change, use a cash machine, pay bills or manage tax records sometimes even before their diagnosis.

Daily activities as a whole are often underpinned by a complex network of cognition. This can include different types of memory for past and future events, so the need to remember to do a task at 8pm tonight for example, involves problem solving skills, and attention. But there are other factors that can hinder someone when performing a task, such as motor problems or their environment.

Warning signs

In a recent analysis of a large data set collected from 34 clinical centres across the US, my colleagues and I looked at what kinds of behaviour are a warning sign for problems with paying bills and managing taxes in people with dementia.

When we obtained the data set, we only looked at people with dementia living in the community, who also had a family caregiver, and a diagnosis of the three dementia subtypes: Alzheimer’s disease, behavioural-variant fronto-temporal dementia, and Lewy body dementia. We then performed an analysis using statistical models to help identify the degree to which certain factors – such as language or motor skills – can predict a particular outcome. In this case, paying bills was the outcome for one model, and managing taxes was the outcome for the second model.

We found that between 11% and 14% of the ability to manage those financial tasks is predicted by executive functioning, or problem solving skills, language, and motor problems. So this means, if a person has problems solving difficult tasks, problems with language, they fall frequently and are moving slowly, and are also more likely to also struggle with financial tasks. Slowness and falls are particularly prominent in people with Lewy body dementia, which is different to Alzheimer’s disease, the most common form of dementia.

Get prepared

This knowledge can help people with dementia. Older people, including people with dementia, can often be subject to financial exploitation. This can be through online or telephone scamming, or knocking on someone’s door trying to sell something. And when people with dementia struggle using internet or telephone banking, they may be more prone to telling strangers their bank details.

A helping hand is needed for those living with dementia to manage their finances.

One way to support people in managing their finances may be to provide training to improve their cognition. It’s important to bear in mind that dementia is neurodegenerative. So while we can help people maintain certain skills for longer, there will come a point where full support for finance tasks is needed. This could involve arranging a lasting power of attorney and naming a person that is trusted to look after financial decisions.

Another way may be to adapt the homes of people with dementia to avoid falls and allow them to move around more freely. In our analysis, we found that falls were linked to poor finance management, meaning that noticing your loved one fall more frequently than usual could be a warning sign that they may also struggle managing their finances. If we can drag out the need for full support for as long as possible, we can help someone stay in their own home for longer. And that is exactly where people feel the happiest.

Other, larger financial questions loom for people with dementia, such as inheritance and dealing with payments for formal care – both at home and in future in a nursing home. These are big financial concerns, which should be discussed once a diagnosis is made, but ideally done before. That way the person is better able to judge what they think should be done with their money, and is less likely to be financially exploited than in the later stages of the condition. The Alzheimer’s Society has also produced some good further guidelines on how to deal with financial abuse in dementia.

While it may be the last thing someone wants to think about who has just received a diagnosis, the best way to avoid financial abuse is to put things in place right away. If that isn’t motivation enough, staying independent in all sorts of activities improves well-being. And that is our ultimate goal, whether we have dementia or not.

Complete Article HERE!

How to ask your parents about their estate plan

Asking your parents about their estate plan isn’t always easy, but in the end, it’s about making their wishes come to reality.

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Making plans for the end of life is important, but it’s a topic a lot of people tend to avoid. In fact, surveys show that some 60 percent of Americans lack a will or estate plan.

Yet, if you were to ask, most of them would assure you they want to care for their family after they die. They want to safeguard the assets they’ve carefully built over the years, keep them in the family, and make sure Uncle Sam doesn’t take the lion’s share.

How do you find out if your own parents have taken care of their plans? Adult children find it challenging to talk with their parents about such things. The subject can be sensitive and emotional. You may worry about appearing self-serving. Yet, it’s important for you to have such details so that you can be better prepared.

Here are some ways to make the topic easier to broach.

1. Watch for off-handed cues, such as your father mentioning his mortality or the reference to having attended a friend’s funeral. This is an opportunity to mention that as much as you don’t want to think about it, you want to respect their wishes, should a critical health situation come into play. Do they have an advance directive and power of attorney? Tell them you need to know in order to help carry out their wishes.

2. Ask your parents for advice on your own estate plan. Inquire as to how they have handled their own will or trust, and open with such questions as, “Who is on your team of professionals for your estate?” Refer to having reviewed your life insurance policy to make sure your beneficiaries are current and ask if they have checked theirs lately to make sure their beneficiaries are up to date.

3. Set an appointment to talk with your parents. If an opening does not come up to talk about this casually, set a time with them to discuss it. Let them know this meeting is about making sure their wishes for the future are respected. When you meet, assure them that you don’t want to guess about their desires and have some questions that address some delicate but important areas.

Once the door opens for you to talk with them about this, be sure you don’t shut it quickly. Assure them you have asked for this conversation in order to make sure they are well taken care of.

Once you begin exploring the details, don’t put your parents on the defensive. Asking why your parents have decided certain things the way they have can cause sensitivity. Instead, as they share information, mirror this back to them so that they feel heard.

An example would be, “What I hear you saying, Mom, is that you prefer to be cremated rather than buried, is that right?” Take it slow, allow them to express feelings about the choices they have made for their future. If they are reticent to talk about money, tell them numbers are not important – you just want to make sure they have planned well for what lies ahead.

If you can set the stage for an honest and candid discussion, be sure you include addressing the following four things: (1) A will or trust with a coordinated estate plan; (2) an advance health care directive; (3) a durable power of attorney; and (4) a list of assets and where they store important documents you might need when the time comes.

Complete Article HERE!

The Art of Dying Well

It’s been nearly two years since Colorado passed the End-of-Life Options Act. How has the controversial law affected Centennial Staters, and how, exactly, does one plan for a good death?

Merely Mortals

This is a story about death.

About how we in the United States—and maybe to a slightly lesser degree, here in Colorado and the West—tend to separate ourselves, emotionally and physically, from both the ugliness and the beauty of our inevitable ends. We don’t like to think about dying. We don’t like to deal with dying. And we certainly don’t like to talk about dying. Maybe that’s because acknowledging that human bodies are ephemeral short-circuits American brains groomed to (illogically) hope for a different outcome. Perhaps it’s also because the moment death becomes part of the public discourse, as it has in the Centennial State over the past several years, things can get uncomfortably personal and wildly contentious.

“As a society, we don’t do a great job of talking about being mortal. My secret hope is that this [new law] prompts talks about all options with dying.”

When Coloradans (with an assist from Compassion & Choices, a national nonprofit committed to expanding end-of-life options) got Proposition 106, aka the Colorado End-of-Life Options Act, on the ballot in 2016, there was plenty of pushback—from the Archdiocese of Denver, advocacy groups for the disabled, hospice directors, hospital administrators, and more physicians than one might think. But on November 8, 64.9 percent of voters OK’d the access-to-medical-aid-in-dying measure, making Colorado the fifth jurisdiction to approve the practice. (Oregon, California, Montana, Washington, Hawaii, Vermont, and Washington, D.C., have or are planning to enact similar laws.) Not everyone was happy, but if there’s one thing both opponents and supporters of the legislation can (mostly) agree on, it’s that the surrounding debate at least got people thinking about a very important part of life: death.

“As a society, we don’t do a great job of talking about being mortal,” says Dr. Dan Handel, a palliative medicine physician and the director of the medical-aid-in-dying service at Denver Health. “My secret hope is that this [new law] prompts talks about all options with dying.” We want to help get those conversations started. In the following pages, we explore everything from how to access the rights afforded in the Colorado End-of-Life Options Act to how we should reshape the ways we think about, plan for, and manage death. Why? “We’re all going to die,” says Dr. Cory Carroll, a Fort Collins family practice physician. “But in America, we have no idea what death is.” Our goal is to help you plan for a good death—whatever that means to you.

Death’s Having a Moment

Colorado’s end-of-life options legislation isn’t the only way in which Coloradans are taking charge of their own deaths. Some Centennial Staters have begun contemplating their ends with the help of death doulas. —Meghan Rabbitt

As the nation’s baby boomers age, our country is approaching a new milestone: more gravestones. Over the next few decades, deaths in America are projected to hit a historic high—more than 3.6 million by 2037, which is one million more RIPs than in 2015, according to the U.S. Census Bureau. Here in Colorado, home to Boulder’s Conscious Dying Institute, there are a growing number of “death doulas” trained to help us cross over on our own terms.

Death doulas offer planning and emotional support to the dying and their loved ones, and since 2013, the Conscious Dying Institute has trained more than 750. Unlike doctors, nurses, hospice workers, and other palliative-care practitioners who treat the dying, death doulas don’t play a medical role. In much the same way that birth doulas help pregnant women develop and stick to birth plans, death doulas help their clients come up with arrangements for how they want to exit this life. That might mean talking about what projects feel important to finish (like writing that book) or helping someone make amends with estranged family members or friends or determining how much medication someone wants administered at the end. “When people are dying, they want to be heard,” says Nicole Matarazzo, a Boulder-based death doula. “If a doula is present, she’ll be able to fully show up for the person who’s dying—and model that presence for family members.”

Over the past year, the Conscious Dying Institute has seen a noticeable jump in the number of Coloradans using its directory of doulas and inquiring about training. When she started working in end-of-life care in 1998, founder Tarron Estes (pictured) says no one had heard of death doulas. Now she’s getting roughly 25 calls a week. “More people are getting comfortable talking about death,” Estes says. “In cities like Denver, there’s a willingness to talk about topics that are taboo in other areas of the country.” Medical aid in dying is, of course, a prime example.

That embrace of the end might be just another part of what is becoming known as the “death-positive movement.” More than 314,000 people have downloaded a free starter packet from the Conversation Project, a nonprofit that gets people talking about their end-of-life wishes. And more than 6,700 “death cafes,” where people gather to talk about death over tea and cake, have popped up around the nation, including several in Colorado. Ready to make a date with death? The Denver Metro Death Cafe’s next meeting is on October 20.

Knocking On A Death Doula’s Door

What to look for in an end-of-life guide.

1. Ask to see a certificate of education and research the organization that provided the doula’s training. Look for curricula that involve at least some in-person instruction. For example, the Conscious Dying Institute’s eight-day, on-site training portion includes lectures, writing exercises, demonstrations, and partner practices. It’s also split into a three-day session and a five-day session, with a 10-week internship requirement between each on-site phase.

2. Compare fees. Death doulas in Colorado charge about $25 to $125 an hour and may offer a sliding scale based on their clients’ financial means.

3. Pay attention to the doula’s listening skills. The last thing you want as you prepare to cross over is someone who hasn’t been hearing you all along.

Ink Your Legacy

If a good death includes making sure your family is cared for, one of the greatest favors you can do for your loved ones is to provide a clear path to all of your worldly possessions. Putting in the time—and paperwork—to plan for the dissemination of all your stuff can save your family months of headaches, heartaches, and contentious probate battles. Not sure what kind of estate planning documents you need? We spoke with Kevin Millard, a Denver-based estate planning attorney, to help you get started.

If you don’t you care about who gets your stuff…
Great; then you probably don’t need a will. If you don’t have a will, your stuff—cars, jewelry, artwork, etc.—goes to your closest relative(s) under what are known as “intestate succession laws” (the laws that govern how your stuff is divided after your death). The state maintains very specific equations for different scenarios. For instance, if you die with a spouse and children from a previous relationship, your spouse gets the first $150,000 of your intestate property plus half of the remaining balance, and the descendants get everything else. Or, if you die with a spouse and living parents, your partner gets the first $300,000 of your intestate property and three-quarters of anything over that. Your parents get

If you do care about who gets your stuff and some of your “stuff” is minor children…
At the very least, you need a guardian appointment document to determine who will care for your children after your death. Physical custody is different from managing any money you might have set aside for your children. You can name one person to manage the money and another to actually care for your children. Also, if your selected guardian doesn’t live where you do, he or she gets to decide whether or not your kids have to move.

If your most valuable stuff is not really “stuff” at all, but more like life insurance policies, 401(k) plans, bank accounts, etc…
Then you’ve probably already designated who gets what by appointing a beneficiary for those things. Anything with a beneficiary—life insurance policies, payable-upon-death bank accounts, retirement plans, or property held in joint tenancy (e.g., your house)—does not get distributed according to intestate succession laws (the laws that govern how your stuff is divided after your death if you don’t have a will). It goes to the listed beneficiary. However, you might want to consider also designating a durable financial power of attorney to manage all of your accounts in the event you become incapacitated before you die. Ditto for a medical power of attorney.

If your stuff is worth millions…
In addition to a will, you should consider a trust. This can protect your estate from being included in lawsuits if you’re sued, and it can also ease some of the estate tax burden on your heirs. But if you’re worth millions, then you probably already have people on retainer who’ve told you this.

If your stuff isn’t worth millions…
You need a will if you want to make life easier for your heirs. (In Colorado, any estate valued at more than $65,000 must go through probate court—a process that takes many months to finalize because you cannot close an estate here until six months after a death certificate has been issued, which can take several days or even weeks.) The general rule in Colorado is that a will must be signed by two witnesses to be valid. If you go through the trouble of having it notarized, it becomes a self-proving will, which means the court doesn’t have to track down the witnesses to certify its validity. You can also handwrite and sign your will; that’s known as a holographic will and does not require witnesses—but it does come with a lot of hand cramps.

My Father’s Final Gift

When it came to preparing for the end of his life, my father planned for the worst, knowing that would be best for me. —Jerilyn Forsythe

It was June in Arizona, and it was hot inside my dad’s kitchen. The whole place smelled musty, the way old cabins do, and I watched as a swath of sunlight coming through the window illuminated lazy plumes of dust. My thoughts felt as clouded and untethered as the drifting specks. I had flown in from Denver the day before and driven more than 100 miles from Phoenix to collect some of my father’s things and bring them to the hospital, where he lay in a medically induced coma.

It had all happened so fast. I’d received a midnight call from a neurosurgeon in Phoenix—the same one who had done a fairly routine surgery to mend a break in my dad’s cervical spine a few weeks earlier. Somehow, the physician said, my father had accidentally undone the surgery, leaving two screws and a metal plate floating in his neck. The doctor explained that he had operated emergently on my dad, who would be under a heavy fentanyl drip—and a halo—until he stabilized.

Although my parents had been divorced since I was two years old, my mother was there to help me that afternoon in Dad’s cabin. Between coaching me through decisions like which of his T-shirts to pack and whether or not I should bring his reading glasses, she happened upon a navy blue three-ring binder, with a cover page that read “Last Will and Testament, Power of Attorney & Living Will for Larry Forsythe,” in his bedroom.

He had never told me about the binder, but my name graced nearly every page within it. On a durable financial power of attorney. On a durable medical power of attorney. On a living will. And on his last will and testament. My typically nonconformist dad had prepared a collection of legal files that would become my bible in the ensuing months.

During the roughly 16 weeks he was hospitalized, I would reread, reference, fax, scan, copy, and email those documents—particularly the powers of attorney—countless times. I also thought, on nearly as many occasions, how fortunate I was that my dad, who probably struggled to pay for a law firm to draw up the papers, had done so just a year before he was unexpectedly admitted to the hospital. Without his wishes committed to paper, I know I would not have been able to fully and confidently make decisions on his behalf. But, navy blue binder in hand, I was empowered to speak with authority to doctors, nurses, bank executives, and even the cable company, which would not have stopped the monthly payments that were dwindling his already heartbreakingly low bank account had I not been designated his financial power of attorney.

I always thought that having a sick or dying loved one meant hospital visits and flowers and tears—all of which is true—but I spent far more time on the phone with medical professionals, financial institutions, and social workers than I did crying. I imagine all of that strife would have been magnified dramatically had we not found that binder.

My dad died a year ago this month. His passing brought more challenges for me, but for a long time after, I silently thanked him for having the foresight to visit that estate planning law firm, for considering what I’d go through when he was no longer here. It was one of the last—and best—gifts he ever gave me.

Process Oriented

Navigating the myriad steps to legally access medical-aid-in-dying drugs can be an arduous undertaking already. Some obstacles, though, are making it even more frustrating for terminally ill patients and their families.

Step No. 1: Determine Eligibility

For a person to be eligible to receive care under the law, he or she must be 18 years or older; a resident of Colorado; terminally ill with six months or less to live; acting voluntarily; mentally capable of making medical decisions; and physically able to self-administer and ingest the lethal medications. All of these requirements must be documented by the patient and confirmed by the patient’s physician, who must agree to prescribe the medication.

Procedural Glitch: Because the law allows individual physicians to opt out of prescribing medical-aid-in-dying drugs for any reason and because some hospital systems and hospices have—in a potentially illegal move—decided not to allow their doctors to prescribe the meds, it is sometimes difficult for patients to find physicians willing to assist them.

Step No. 2: Present Oral And Written Requests

An individual must ask his or her physician for access to a medical-aid-in-dying prescription a total of three times. Two of the requests must be oral, in person, and separated by 15 days. The third must be written and comply with the conditions set in the law (signed and dated by the patient; signed by two witnesses who attest that the patient is mentally capable of making medical decisions, acting voluntarily, and not being coerced by anyone).
Procedural Glitch: Although mandatory waiting periods are required in all jurisdictions with medical-aid-in-dying laws, these requirements are especially challenging for patients in small towns or rural areas, where there might not be a doctor willing to participate for 100 miles. For terminally ill patients, making two long road trips to present oral requests can be next to impossible.

Step No. 3: Get A Referral To A Consulting Physician

The law requires that once a patient’s attending physician has received the appropriate requests and determined the patient has a terminal illness with a prognosis of less than six months to live, the doctor must refer the patient to another physician, who must agree with the diagnosis and prognosis as well as confirm that the patient is mentally capable, acting voluntarily, and not being coerced.

Procedural Glitch: Once again, difficulties with finding a willing physician can cause lengthy wait times.

Step No. 4: Fill The Prescription At A Pharmacy

Colorado’s medical-aid-in-dying law doesn’t stipulate which drug a physician must prescribe. There are multiple options, which your doctor should discuss with you. Depending on your insurance coverage (Medicare, Medicaid, and many insurance companies do not cover the drugs), as well as which hospital system your doctor works in, getting the medication can be as simple as filling a script for anything else.

Procedural Glitch: Not every hospital system will allow its on-site pharmacies to fill the prescriptions—HealthOne, for example, doesn’t. Corporate pharmacies, like Walgreens, and grocery-store-based pharmacies often will not fill or do not have the capability to fill the prescriptions. What’s more, Colorado pharmacists are able to opt out of filling the prescription for moral or religious reasons. That leaves doctors and patients in search of places to obtain the drugs once all of the other requirements have been fulfilled.

Step No. 5: Self-Administer The Medications

Although the time and place are mostly up to the patient, if he or she does decide to take the life-ending drugs, he or she must be physically able to do so independent of anyone else. Physical capability is something patients must consider, especially if their conditions are progressing quickly and could ultimately render them incapable of, for example, swallowing the medications.

Procedural Glitch: Depending on the drug that is prescribed and the pharmacy that fills it, patients and/or their families are sometimes put in the position of having to prepare the medication before it can be administered. Breaking open 100 tiny pill capsules and pouring the powder into a liquid can be taxing even under less stressful circumstances.

Step No. 6: Wait For The End

In most cases, medical-aid-in-dying patients fall asleep within minutes of drinking the medication and die within one to three hours. The law encourages doctors to tell their patients to have someone present when they ingest the lethal drugs.

Procedural Glitch: Although most doctors who prescribe the medication do not participate in the death, it is worth asking your physician or your hospice care organization in advance about what to do in the minutes immediately after your loved one has died at home, as 78.6 percent of Coloradans who received prescriptions for life-ending meds under the law and subsequently died (whether they ingested the drugs or not) did in 2017. Someone with the correct credentials will need to pronounce death and fill out the form necessary for a death certificate (cause of death is the underlying terminal illness, not death by suicide) before a funeral home can pick up the body.

Who’s In & Who’s Out?

A short breakdown of metro-area hospitals’ and health systems’ stances.

Completely Out
SCL Health
Centura Health
VA Eastern
Colorado Health Care System
Craig Hospital

In, With Caveats
HealthOne
Boulder Community Health

All In
Denver Health
UCHealth
Kaiser Permanente Colorado

Alternative Endings

An Oregon nonprofit is Colorado’s best aid-in-dying resource.

Although Oregon’s Compassion & Choices is best known here as the organization that helped push Proposition 106 onto Colorado’s November 2016 ballot, the nation’s oldest end-of-life-options nonprofit didn’t abandon the Centennial State after the initiative passed. “First, we help states enact the laws,” says Compassion & Choices’ Kat West, “then we stick around to help with implementation and make sure it’s successful.”

In Colorado, the rollout has been fairly fluid. Perfect? Certainly not. Fortunately, Compassion & Choices has been trying to smooth some of the wrinkles in the system. The biggest help so far might be its website. The nonprofit keeps its online content updated with everything a Coloradan needs to know about the state’s End-of-Life Options Act. Of particular note: the Find Care tool, which lists clinics and health systems that have adopted supportive policies, since finding participating physicians, hospitals, and pharmacies is still challenging. “Patients don’t have the time or energy to figure this out on their own,” West says. “We do it for them.”

Hospice Hurdles

Why some local hospices aren’t as involved in Colorado’s aid-in-dying process as you’d expect.

Despite what you might have heard, hospice is not a place where one goes to be euthanized. “That misconception is out there,” says Nate Lamkin, president of Pathways hospice in Northern Colorado. “We don’t want to perpetuate the thought that we’re in the business of putting people down. That’s not what we do.” That long-standing myth of hospice care is, in part, why many Colorado hospices have declined—potentially in violation of state law—to fully participate in the End-of-Life Options Act.

By and large, the mission of hospice—which is not necessarily a place, but a palliative approach to managing life-limiting illness—has always been to relieve patient suffering and to enhance quality of life without hastening or postponing death, Lamkin explains. “This law kind of goes in opposition to that ethos,” he says. To that end, like many other hospices, Pathways has taken a stance of neutrality: Pathways physicians cannot prescribe the life-ending medication, but the staff will support their patients—by attending deaths, by helping with documentation—who choose the option. “We are not participating by not prescribing,” Lamkin says. “But it is the law of the land, and we fully support those who choose medical aid in dying.”

Pathways is not alone in its abridged participation. Other large Front Range hospice care providers, like the Denver Hospice, have also either taken an arm’s-length stance on the practice or opted out entirely. End-of-life options advocacy nonprofit Compassion & Choices regards this as willful noncompliance, which could leave hospice providers exposed to legal action, especially considering that 92.9 percent of Colorado’s patients who died following the reception of a prescription for aid-in-dying meds in 2017 were using hospice care to ameliorate symptoms and make their deaths as comfortable as possible. But, says Compassion & Choices spokesperson Jessie Koerner, when hospices abstain from fully supporting medical aid in dying, it strips away Coloradans’ rights—rights to which the terminally ill are legally entitled.

 

Filling More Than Just Prescriptions

After spending years at a chain pharmacy, Denverite Dan Scales opened his own shop in Uptown so he could better serve his customers. 5280 spoke with him about being one of the few pharmacists in Colorado meeting the needs of medical-aid-in-dying patients.

5280: Of the roughly 70 medical-aid-in-dying prescriptions written in Colorado in 2017, Scales Pharmacy filled approximately 22 of them. Why so many?
Dan Scales: As a pharmacist, you have no obligation to fill a script that’s against your moral code. So there are many pharmacists who won’t fill the drugs. Also, many chain pharmacies—like Walgreens—don’t mix compounds, which means they can’t make the drug cocktail a lot of physicians prescribe. That leaves independent pharmacies like ours.

You don’t have any objections to the state’s End-of-Life Options Act?
I really believe we kinda drop the ball at the end of life. We do a poor job of allowing people to pass with dignity. I won’t lie, though: After filling the first couple of prescriptions, I did feel like I helped kill that person. I needed a drink. But talking with the families after helps.

You follow up with your patients’ families?
Yes. We ask them to call us after their loved one has passed. We want to know how it went, how the drugs worked, how long it took, was everything peaceful? I’d say about 30 percent call us to offer feedback. It helps us know how to better help the next person. You have to understand, this is not a normal prescription; we talk with these people a lot before we even hand them the drugs. We get to know them.

If you could change one thing about the process, what would it be?
It’s frustrating that there’s not more pharmacy participation in our state. We’re having to mail medications to the Western Slope because people can’t find the services they need.

Final Destination

She couldn’t travel with him this time, but a Lakewood woman supported her husband’s decision to go anyway.

They met online, way back in the fuzzy dial-up days of 1999. J and Susan* weren’t old, exactly, but at 50 and 49, respectively, they had both previously been married. They quickly learned they had a lot in common. They were both introverts. Each had an interest in photography. And they loved to travel, especially to far-flung places, like Antarctica. After about two years of dating, they got married in a courthouse in Denver. For the next 17 years, they saw the world together and were, Susan says, “a really great team.”

The team’s toughest test began in fall 2017. Susan says she should’ve known something was wrong when she asked J if he wanted to go on an Asia-Pacific cruise and he balked. Upon reflection, Susan realized J likely hadn’t been feeling well. “That hesitation was a clue,” she says. The diagnosis, which came in January 2018, was a devastating one: stage 3-plus esophageal cancer. It was, as Susan puts it, “a cancer with no happy ending.”

It would also be, Susan knew, a terribly difficult situation for J to manage. He had never been able to stand not being healthy; she was certain he wouldn’t tolerate being truly sick. And esophageal cancer makes one very, very sick. The tumors make swallowing food difficult, if not impossible. As a result, some sufferers lose weight at an uncontrollable clip. They can also experience chest pain and nasty bouts of acid reflux. J knew he was dying—and that he didn’t want to go on living if he could no longer shower or go to the bathroom alone or be reasonably mobile. He broached the topic of medical aid in dying with Susan in February. “Honestly, I had already thought about it,” she says, “so I told him I thought it was a great idea.”

As a Kaiser Permanente Colorado patient, J had access to—and full coverage for—the life-ending drugs. The process, Susan says, was lengthy but seamless. J got a prescription for secobarbital and pre-dose meds; they arrived by courier to their house in April. Having the drugs in hand gave J some peace. He wasn’t quite ready, but he knew he was in control of his own death. He would know it was time when he began to feel like his throat would be too tight to swallow the drugs—or when he became unable to care for himself.

That time came in late June. He was weakening, and he knew it. Having decided on a date, J had one last steak dinner with his family on the night before his death. “He was actually able to get a few bites down,” Susan says. “He was also able to have a nice, not-too-teary goodbye with his stepchildren. It was wonderful.”

Although she was immeasurably sad when she woke the next day, Susan says seeing the relief on J’s face that morning reinforced for her why medical-aid-in-dying laws are so important. She knew it was unequivocally the right decision for him—a solo trip into the unknown, but he was ready for it. At noon on June 25, J sat down on the couch and drank the secobarbital mixed with orange juice. “Then he hugged me,” Susan says, “and he said, ‘It’s working’ and fell asleep one minute later. It was really perfect. He did not suffer. It was all just like he wanted it.”
*Names have been altered to protect the family’s privacy.

Drug Stories

A numerical look at medical-aid-in-dying meds.

$3,000 to $5,000: Cost for a lethal dose of Seconal (secobarbital), one of the drugs doctors can prescribe. The price for the same amount of medication was less than $200 in 2009; the drugmaker has increased the cost dramatically since then. Many insurance companies will not cover the life-ending medication.

4: Drugs that pharmacists compound to make a lower-priced alternative to Seconal. The mixture of diazepam, morphine, digoxin, and propranolol, which is reportedly just as effective as Seconal, costs closer to $500 (pre-dose medications included).

5: Ounces of solution (drugs in powder form that are dissolved in a liquid) a medical-aid-in-dying patient must ingest within about five to 10 minutes.

2: Pre-dose medications—haloperidol to calm nerves and decrease nausea and metoclopramide to act as an anti-vomiting agent—patients usually take about an hour before ingesting the fatal drugs.

10 to 20: Minutes it typically takes after the meds are ingested for a patient to fall asleep; death generally follows within one to three hours.

Uncomfortable Silence

Just because roughly 65 percent of voters approved Colorado’s End-of-Life Options Act in 2016 doesn’t mean Centennial Staters are completely at ease with the idea of the big sleep. Just ask these health care professionals and death-industry veterans.

“In a perfect world, I think one should be with family at the end. There are benefits of sitting with a dying person. Compassion means ‘to suffer with.’ Sometimes that suffering isn’t physical; it’s emotional. A lot of healing can happen at the end.”
—Dr. Michelle Stanford, pediatrician, Centennial

“If people’s existential needs and pain are addressed—things they need to talk to their doctors and family about—natural death can be a beautiful thing. It doesn’t have to be scary. In American society, we don’t talk about death and dying. It’s because we fear it. We are afraid of the anticipated pain, of having to be cared for. In other cultures, there is more family support and there is no thought of being a burden. This is a part of life, part of what should naturally happen.”
—Dr. Thomas Perille, internal medicine, Denver

Doctors don’t die like our patients do. We restrict health care at the end of our lives. My colleagues don’t do the intensive care unit and prolonged death. We, as doctors, are not doing a good job helping patients with this part of their lives. Dying in a hospital is the worst thing ever. There is an amazing difference dying at home around friends and family.”
—Dr. Cory Carroll, family practice physician, Fort Collins

“Most people are unprepared for what needs to happen when a death occurs. Those who choose to lean toward the pain with meaningful ritual or ceremony are the ones I see months later who are moving through this process toward healing. The ones who think that grief is something that occurs between our ears are the ones who struggle the most. Sadly, we live in a society and a culture where grieving and the authentic expression of emotion is sometimes looked down upon.”
—John Horan, president and CEO of Horan & McConaty Funeral Service, Denver

We only die once, so let’s do it right. When death happens, whether it’s our own or a loved one or someone we know, it’s not just their death that we’re acknowledging, but it’s life that we are all acknowledging. I think it’s helpful and healthy to honor death because in doing so, we are helping to celebrate life.”
—Brian Henderson, funeral celebrant, Denver

63 Percentage of Americans, 18 years or older, who die in hospitals and other institutional settings, like long-term care facilities and hospices. In 1949, however, statistics show that only 49.5 percent of deaths occurred in institutions. Because death in the home has become more uncommon, experts say, few Americans have direct experience with the dying process and that separation has, in part, led us to fear, misunderstand, and essentially ignore the end of life as an important stage of life itself.

Sources: Centers for Disease Control and Prevention; American Psychological Association

Another Shoulder To Lean On

Front Range support groups that can make bereavement more bearable. —Will Jarvis

Healthy Self. Healthy Life.

This two-therapist firm offers support sessions specifically for those in their 20s and 30s as well as an anticipatory grief gathering called Facing The Long Road. This latter group—which focuses on helping 19- to 36-year-olds manage the despair and caregiving duties that can come with having a parent with a terminal illness—zeroes in on a demographic whose busy lives often get in the way of their well-being. Cost: $35/session

The Compassionate Friends

The premise behind the Compassionate Friends, a 49-year-old international organization, is that only other bereaved parents can understand the pain of losing a child. Today, the group gathers parents, grandparents, and family members and encourages peer-to-peer healing in monthly sessions. Six Front Range chapters provide safe places for those struggling with loss to share coping mechanisms and ways to find a new normal.
Cost: Free

Judi’s House

Childhood traumas, such as losing a sibling or a close relative, can be especially challenging to overcome. That’s why this nonprofit, housed two blocks from City Park, has trained clinicians on staff to help both children and families dealing with grief. Its 10-week structured programs put kids in groups of five to 10 other children, and the organization provides a free dinner before each weekly meeting—giving anguished families one less thing to worry about.
Cost: Free

What Remains

While there are myriad ways to die, in Colorado there are only a few methods by which your body can (legally) be disposed: entombment, burial, cremation, or removal from the state. We spoke with Centennial State funeral homes and cemeteries to understand the options. Just remember: Colorado law says the written wishes of the deceased must be followed, so discuss what you want with your family ahead of time so they aren’t surprised.

Burial

Typical cost: From about $5,000 for a casket and full funeral service, plus about $5,000 for cemetery fees (plot, headstone, etc.)
What you need to know: In Colorado, a funeral home cannot move forward with a burial (or cremation or transportation across state lines) until a death certificate is on file with the county and state, which normally takes a few days. The funeral home will need information like social security numbers and the deceased’s mother’s maiden name to begin the process. Further, state law requires that if a body is not going to be buried or cremated within 24 hours, it must be either embalmed (using chemicals as a preservative) or refrigerated, so make sure your loved ones know what you prefer. Your family can opt to have your body prepared at a funeral home and then brought home for a viewing or service, though. Finally, federal law mandates that your family be given pricing details about caskets, cemetery fees, and the like before they make a decision, so they are prepared for the costs.

Cremation

Typical cost: From about $600 for transportation, refrigeration, and cremation; additional fees for urns, memorials, and/or funeral services
What you need to know: Choosing cremation does not preclude having a funeral; many people opt to have funeral services and then have the body cremated. (In this case, you’ll still need a casket, but you can rent one instead of purchasing it.) Once you’ve gone the ashes-to-ashes route, you can’t be scattered willy-nilly on federal land, in part because straight cremains are not healthy for plants. For example, your family will need to apply for a free permit—which stipulates how and where ashes can be spread—if you’d like to have your cremains placed inside Rocky Mountain National Park. The most popular national park in Colorado got more than 180 such requests last year.

Green Burial

Typical cost: From about $1,500
What you need to know: Only one Colorado cemetery (Crestone Cemetery) and handful of funeral homes (like Fort Collins’ Goes Funeral Care & Crematory) have applied for and been certified by the Green Burial Council. That doesn’t mean there aren’t various shades of “green” burial available throughout Colorado, though, at places such as Littleton’s Seven Stones Chatfield—Botanical Garden Cemetery and Lafayette’s the Natural Funeral. Among the greener ways to go: avoid embalming (so the harmful chemicals don’t seep into the ground upon decomposition); opt for a simple shroud or biodegradable casket; have your grave be dug by hand, instead of with machinery, which comes with a carbon footprint; or select a cemetery or cremation garden that uses environmentally friendlier plants for landscaping (for example, Seven Stones uses rhizomatous tall fescue for its meadow, which requires less water to maintain).

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