Ask DDNC: Advance Care Planning

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We frequently get asked questions about Death with Dignity or advance care planning for situations where dementia might be involved. Many individuals have concerns about confronting Alzheimer’s disease or other dementias in the future; others are in the midst of difficult and frightening situations when their family members are struggling with the disease.

The uncomfortable reality is there are no easy or clear cut answers. None of the three states with Death with Dignity laws allow individuals to participate who have dementia or Alzheimer’s disease advanced to the degree where judgment or decision-making is impaired. Those with early stage dementia without cognitive impairment do not qualify because they do not have a terminal diagnosis.

In the absence of expanded end-of-life care choices, advance care planning is essential. Two documents to consider: Health Care Directive (also called a Living Will) and a Durable Power of Attorney for Healthcare (most states allow you to combine these into one document). There are online versions available (MyDirectives), but the most prudent advance planning approach involves working with an attorney who is familiar with your state’s rules and regulations.

Another option available in many states is the POLST program. POLST stands for Physician’s Orders for Life-Sustaining Treatment, and it allows for your healthcare wishes to become a part of your medical chart. There are many benefits of participating in POLST programs, including: ease of access to your advance care documents, increased likelihood your healthcare wishes will be honored during an emergency, and portability (POLST forms can follow you from institution to institution).

One final option: an Alzheimer’s and Dementia Advance Directive developed in Washington State by Compassion & Choices of Washington, our colleagues in the Death with Dignity movement. Endorsed by the Western and Central Washington State Chapter of the Alzheimer’s Association, this document allows you to outline your preferences for care across many life dimensions including behavior management, personal and daily activities, and intimate relationships. While this document might not be deemed legal where you live, it can be a useful worksheet to explain your wishes to your children, family members, and friends.

While Alzheimer’s and other dementias are daunting diseases to face, advance planning may help provide a small amount of control to those who need it the most.

View full post on Death with Dignity National Center



Nudging to Improve End-of-life Care Planning

Several years ago, Richard Thaler and Cassie Sunstein published a book with a simple title and an apparently simple premise. The book was called Nudge: Improving Decisions About Health, Wealth, and Happiness. The premise was we can improve how we make decisions with small generally painless nudges. The work popularized leading edge neuroscience that postulates a division of labor in the human brain, between the fast System 1, that has a complete catalog of our entire experience and makes snap decisions to protect us from foolish mistakes, and the slow System 2, which uses a deliberative approach to problems that weighs evidence, does calculations, questions assumptions and so on, to make a reasoned decision that ultimately will also protect us from our impulsive selves. (Did I say simple? It is really, it’s just a little wordy to describe.)

How about a story? A study looked at what happens when you put a pound of M&Ms in a single large bowl, versus putting a 1/4 pound in four small bowls. The study showed people ate a significantly larger number of M&Ms from the large bowl, because System 1 assessed the large bowl as the default serving size. So they tested people to see if simply unpacking a large package of some food into smaller packages would reduce calorie intake, and of course, it did! There are dozens of other examples of how simple deliberate modifications in things like default options, serving dishes, daily routines, and so on, can make significant changes in outcome, without any apparent change in behavior required. You still reach for the M&Ms in the bowl, but without even meaning to, you do it less often and take fewer when you do. The smaller bowl is the nudge towards a more reasonable choice.

The idea is to take deliberate steps (using System 2 for the thinking part) to set up defaults that take advantage of the way System 1 makes decisions. So, what does this have to do with death and end-of-life care and all that?

That’s what I wanted to find out! Last week, I hosted #DWDchat and we focused on nudging and how our choices about end-of-life care are subtly influenced by our System 1 or System 2 decision making. When someone brings up the subject of advanced directives, most of us leave the driving to System 1, which says, more or less automatically, that yeah, we know what we want, and we leave it at that. If we could engage System 2, we might think more deeply about the issue and realize that our loved ones can’t know how we feel if we don’t tell them.

After a few tweets to explain the idea and give examples, I asked if tweetchatters were familiar with the idea, if they’d encountered it, and whether they could think of ways we could use nudging to help people start The Conversation about end-of-life choices and advanced directives.

The discussion was lively and thoughtful. Some worried there were already a lot of distractions and strong emotions when facing end-of-life situations. Most took the view that doctors and healthcare professionals might use some kind of nudge, such as providing a pamphlet or informational form, to ease into the conversation, and others saw that as too intrusive or unlikely to have a positive impact unless done extremely carefully. Some pointed out the time to do this is long before such decisions need to be put into action, when we’re not faced with immediate choices. In the end, I think we all agreed at least on this: any action taken to initiate a conversation like this, whether direct or indirect, requires great tact and awareness of the emotional state of the patient and caregivers.

So when it comes to starting The Conversation, what simple deliberate nudges can we implement to make having the talk the default rather than the exception? Please tell us in the comments section below!

Some additional reading about nudging:

View full post on Death with Dignity National Center

Planning a Funeral: Top 3 Things You Should Know

Rachel Zeldin is the founder and CEO of I’m Sorry to Hear, an online community dedicated to helping you with funeral planning. Following the death of a great-uncle and experiencing the challenges that accompanied the funeral planning process, Rachel set out to make it easier to find, compare, and share funeral planning experiences with one another. A labor of love, it is a true for-you, by-you website similar to the TripAdvisor of funeral planning.

Planning a funeral isn’t an easy task. Unlike other major life cycle events and purchases, you’re faced with some major challenges: time to plan is short, you’re grieving, finances are often a concern, and you often know little about the topic and have a very small time frame to do your homework before making decisions.

Below are three things you should know when planning a funeral.

  1. Be familiar with the Funeral Rule.
    The Funeral Rule is a set of laws put in place and enforced by the Federal Trade Commission (FTC) to protect the funeral consumer. The principles of the Funeral Rule revolve around these eight rights:

    • Get a written, itemized general price list when you visit a funeral home.
    • See a written casket price list before you see the actual caskets. (This also applies for outer burial containers.)
    • Get price information on the telephone.
    • Buy only the funeral arrangements you want.
    • Receive a written statement after you decide what you want and before you pay.
    • Option to provide the funeral home with a casket or urn you buy elsewhere.
    • Able to use an unfinished wood box or alternative container for direct cremation.
    • Can decide to make funeral arrangements without embalming.

    Be sure to read the full version on the FTC website and report any violations to the FTC or local Funeral Consumer Alliance (FCA) affiliate.

  2. More Money Doesn’t = More Love.
    You don’t need to spend a ton of money to have a funeral or to demonstrate your love for your loved one. Funerals can cost as little or as much as you want; so, you shouldn’t feel pressured to spend a certain amount on it.

    It’s easy to make impulse decisions and purchase more than you want or can afford. To avoid this, before going to a funeral home to finalize the details of the funeral arrangements, decide which services you want and which you don’t and stick to it.

  3. Do your homework!
    Just like any other major service or item you will purchase, be it a wedding, vacation, or even a car, it is up to you to do your homework and decide what you want and how much you will spend. This isn’t something to be ashamed of doing—this is being a smart consumer!

    Be sure to select only the services you want and don’t feel obligated to purchase a package, be it the “Basic Package” or the “Platinum Package.” Only pay for the services you need and will use. Since funeral services vary in price from funeral home to funeral home, it’s wise to call three to five funeral homes to understand the standard pricing in your area and use that to negotiate better terms with the funeral home you ultimately decide to use. Some FCA affiliates have done the legwork for you; check their website to see if they have a current Price Survey listed in your area.

    With the Internet open 24/7, make use of all of the online tools and information available to you. At I’m Sorry to Hear we give you an easy way to find a funeral home using our Basic or Advanced Search features. We already list information on every funeral home in Pennsylvania, New Jersey, New York, Maryland, Delaware, Virginia, and Washington, DC in a standard format; so, it’s easy to compare options and see what services they offer. You can also leave and read Funeral Home Reviews on the quality of service they provide.

    Additionally, you can download a funeral planning checklist, learn about your casket options via the Casket Guide, and read and exchange funeral planning tips with members of our community.

Keeping these three things in mind, you can be a confident and savvy consumer even when it comes to end-of-life arrangements for you or a loved one.

View full post on Death with Dignity National Center

Funeral Home in Youngstown Ohio – At What Age and/or Time Should I Consider Pre Planning?

www.youngstownwarrenfunerals.com Owner of Lane Family Funeral Homes, Joseph Lane, explains when it is a good time to pre plan a funeral. Lane Family Funeral Homes has proudly served the hard-working Youngstown community since 1855. Lane Family Funeral Homes has locations throughout the Youngstown and Warren area including Austintown, Niles, Canfield, Brookfield, Boardman, Warren, Mineral Ridge and Cortland. If you want a free phone consultation with one of our funeral professionals about pre planning call us at (330) 967-0101. www.youtube.com

Funeral Planning Talk to UNM Retirees

agoodgoodbye.com Gail Rubin, The Doyenne of Death, talks about funeral planning issues at a meeting of the UNM Retirees Association: shopping around ahead of need, cremation, green burial issues, and more!

How to Choose a Casket and Burial Vault When Funeral Planning or Preplanning a Funeral

Funeral planning advice from Chris Hill, Founder of www.funeralresources.com, about key considerations when choosing a casket or burial vault. Planning a funeral involves many decisions that we would rather not think about, but often must face. Among some of these difficult decisions are the different types of caskets, prices, sizes, choosing a casket with a cremation, the FTC’s Funeral Rule, burial vaults, and more. You can find all of this information, including some of the most reputable and credible Funeral Directors and casket companies, at http Christopher P. Hill, Founder

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