Setting the tone when you’re seriously ill or dying…

-*** Time for this post? Reading…8 minutes. Viewing…9 minutes. Thinking about what you would do…as you wish.

After writing last week’s blog about being with the dying, it occurred to me that…

As such, we have responsibilities…

The dying person can help friends and family in a variety of ways, yet we don’t typically think about dying from that point of view. I suspect that’s because we tend to approach death passively, as something that happens to us rather than a normal life process that we will ultimately engage in, like it or not. Instead of participating, we come at it from a victim mindset.

Role models for a different way…

One of the best things about the internet is the access we have to people who think and behave differently. It’s a good way to gain a broader perspective and find our place within the possibilities.

Pieter Hintjens…

Pieter Hintjens was a software developer, writer, and father who was diagnosed with terminal cancer at age 53. An article in The Guardian reports on Hintjens’ final website post in which he outlined his “protocol for dying.” He wrote about what not to say, what can lead to happy conversations, and the duties of the dying. He listed the following duties of the dying, elaborating on each:

  • Be happy.
  • Obviously, put your affairs in order.
  • Remove all stress and cost that you can.
  • Be realistic.
  • Assume the brutal worst.
  • Be honest and transparent with others.

He makes a very good point about being honest. When the dying person is honest and transparent with others, it makes things much easier for them. When they can talk about your death with you, it helps them process what’s happening.

Hintjens’ approach was proactive—to be the one initiating the conversation rather than creating a climate in which others had to tiptoe around him, not sure what to say. That is definitely one of the helpful things a dying person can do.

Setting the tone…

In addition to talking about our situation, we can help others know how to respond by the way we communicate. Choice of words and how we put them together sets the tone for all communication, whether written or verbal. Pieter Hintjens’ tone is clearly pragmatic and logical. Although he doesn’t use these exact words, he conveys that: It is what it is. We all have to deal with this situation, so let’s get on with it.

His manner isn’t everyone’s. Some prefer a softer approach, but that doesn’t mean saying nothing or pretending it isn’t happening. Ignoring or denying the situation doesn’t help, it just invites people to default to the cultural norm, which is to see you as a victim. Unless you want to be treated that way, it’s important to communicate intentionally.

The way around landing in victimhood is to set the tone by choosing your words thoughtfully. Below is a good example. Sarah Kerr, who I introduced recently, has posted lots of educational material, including videos, on a wide range of topics related to her work as a death doula. When she discovered she has breast cancer, Sarah talked about it in a video.

Sarah Kerr’s approach…

Her diagnosis is not terminal. But any cancer is a serious condition and people have a culturally induced perception of what it means. Notice how she sets the tone in her communication:

  • She states the facts directly, including a realistic sense of what this diagnosis means and the possibility of a positive prognosis.
  • She expresses confidence in her medical team.
  • When she talks about how she’s feeling, it’s clear that she isn’t recording this in the midst of the early dark days after diagnosis. She’s able to speak with perspective because she has already processed it.
  • She reassures us that she’s doing what she thinks best. In her case, that includes mainstream medical treatment, lifestyle adjustments, and really going into it rather than seeking distraction.
  • She invites support and also provides specific direction as to what that would be.
  • She identifies, in the nicest of ways, what would not be helpful. In this case, that’s advice—no matter how well-meaning it is.

We got a clear sense of Sarah’s viewpoint about dealing with her cancer. In case this interested you, here’s a summary:

  • It’s not a war to be fought.
  • Her body has been disrupted from its normal healthy functioning.
  • The existence of this cancer tells her that something is out of balance.
  • She’s taking this as an indication of a problem to be solved, as a call for healing at a deep level.
  • She is not asking why this is happening to her. Instead her question is: What is this asking of me?

What suits you?

Most of us don’t write on a website or speak on video—and a health crisis is not the time to start. But an email update to your near and dear is a good way to get everyone on the same page—as long as you write clearly so that you aren’t misunderstood.

Your newsletter can provide details about your diagnosis and treatment, thus ensuring that everyone has the same accurate information. When deciding what to divulge, though, keep in mind my mom’s advice: Never put anything in writing that you wouldn’t want to see on the front page of the newspaper!

Besides providing the facts, a group email can set the tone by sharing how you’re feeling—physically, mentally, and emotionally. Here’s an example of tone-setting that came from a family member who had used email to update all of us after her cancer diagnosis.

I’m feeling fine, other than the normal issues with my back assumed to be caused by longstanding arthritis and a pelvis which likes to get out of line on a regular basis and has been acting up during all the various testing situations. I am still seeing the chiropractor who is cautious and doesn’t work near the area of L1-2. That will hopefully keep me mobile for a long time in spite of the new issue.

I have scratched bungee-jumping and parachuting off my bucket list and I’ve quit jumping off curbs and bottom steps to protect the stability of the diseased bone.

Once the biopsy has healed I will ask if there are any other limitations of activity…one step at a time…

It isn’t great news but things could be so much worse…

What are your thoughts about our responsibility when we’re seriously ill or dying? Do you have experience to share, examples of what worked or didn’t? As always, I invite your comments.

Being with a Person who is Dying

*** Time for this post?  Reading…5 minutes. Viewing…an hour, but not necessarily all at once.

My life has not yet required me to be on hand when someone is dying. And I’m pretty sure that can’t continue. So I’ve been looking for good information about how to be with someone who’s near the end of life.

Visiting someone who’s dying…

I found an excellent article about deathbed visiting which offers very practical tips based onthe author’s challenging experience of managing the death of a family member at home.

As my father-in-law lay in his deathbed, after an illness so brief his friends and colleagues were stunned to hear he had entered his last days, people wanted to say goodbye. So in those last days, we got a crash course on how to visit the dying. … I will love some of those visitors forever. Others I wouldn’t mind never seeing again. But collectively they taught us some valuable lessons.

Her article is recommended reading for everyone. If you don’t have time now, it’s worth bookmarking for when you’re in the situation. Here are some of the main points, explained more fully in the article.

  • Be in touch, but don’t expect a response.
  • Say “We would love to visit,” or “Are you receiving visitors,” not “When can we visit?”
  • Be ready for plans to change at any moment.
  • Bring treats.
  • Don’t bring plants.
  • Handle silence.
  • Don’t be needy.
  • Have something to say.

Something to say!?

What on earth can you possibly say to a person who is dying? Hallie Levine, in the AARP newsletter, suggests showing support by saying things such as:

  • I wish this wasn’t happening to you.
  • This must be hard news for you to share.
  • I’m here for you.
  • I’m thinking of you.

She further advises being as specific and concrete as possible about any potential assistance.

“People often say, ‘if you need anything, call me,’ but that puts the onus on the person dealing with the life-threatening disease,” says Rebecca Axline, a licensed clinical social worker at the Houston Methodist Neurological Institute. “Instead, say, ‘Can I bring a casserole by Thursday?’ or drop off a gift card for a massage or dinner at a local restaurant.”

Things NOT to say…

From a helpful article in AgingCare:

“Avoid clichés or platitudes,” notes psychiatrist and author Marcia Sirota, M.D. “Saying things like, ‘Everything happens for a reason,’ and ‘It’s God’s will,’ can make the person feel like their illness is their fault.”

Saying things like “You’re strong” and “You’ll get through this” is equally problematic. Although it can be tempting to reassure a patient that they’ll be okay, this approach can be hurtful because it does not acknowledge the patient’s feelings and concerns. “Maybe they don’t feel strong right now and need to feel like they can be afraid,” Dr. Sirota adds. “You need to give them the space they need to share their fears and come to terms with them.”

The Marie Currie Hospice in the UK has a good overview article by social worker Glyn Thomas. It has links to in-depth discussion on topics such as:

  • What to do when someone is in denial about their diagnosis
  • How to help with day-to-day caring
  • What it’s like to live with a terminal diagnosis
  • Helping someone come to terms with a terminal diagnosis

Don’t wince when tough things come up…

Here’s one reason we should all come to terms with death—to be able to support those around us. It helps the dying go in peace if they’ve been able to talk about how they feel and what’s on their mind.

This could include loose ends such as making a will if there isn’t one, giving away belongings, etc. And fears about the unknowns ahead. If you can be comfortable listening, you’ll be of great service. And if you’re willing to facilitate completing undone tasks or locating resource people to allay the fears, that’s a bonus.

Most of us find this a challenge because we’ve grown up without role models for being with people as they approach death. Becki Hawkins, in the video below, is a terrific role model. A hospice nurse and chaplain, Becki has been at the bedside of terminally ill patients for more than 30 years. She is the author of Transitions: A Nurse’s Education About Life And Death.

This is a long video but easily viewed one story at a time.

This is what I’ve found so far to help me be with someone who’s dying. Do you have any insights to share?

Initiate Straightforward Conversation

*** Time for this post? Reading…10 minutes. Viewing…17 minutes. Considering…as you wish.

Death. Dying. Have you noticed that most people dance around the subject of death when they’re in a situation that puts it in their face—whether it’s their dying or someone else’s.

Case in point—the funeral director I met with a few months ago. I was making my Plan B arrangements in case my body donation doesn’t go through. (This could happen if its condition is unsuitable at the time I die.)

Obviously, I wasn’t prepaying for a funeral since I don’t know whether or not I’ll need their services. But he was willing to meet with me, on that understanding, to fill out the paperwork. There are some tricky questions on the forms that must be submitted when registering a death, and I wanted to make sure the correct answers are on file.

Within minutes, it was obvious that the funeral director was selecting his words carefully in an effort to avoid causing me discomfort. Fair enough, in that we had just met and he was trying to assess where I was coming from.

I helped him out by saying something very direct about my death that let him know he could speak freely. The conversation was much more satisfying after that.

Elders have a responsibility…

I think it’s our responsibility, as elders, to get over ourselves and any preciousness we may feel about dying. Shifting our mindset leads to more constructive behaviours, and we will be modelling a better way for our children,  grandchildren, and perhaps also our friends.

Death phobia…

We Baby Boomers have grown up in a death-phobic culture in which dying has been sanitized and commercialized—like most of our life experiences. This has left us crippled, unable to handle death well. And that’s what our children and grandchildren are learning from us. This is the time for us to turn the tide—to learn what death requires of us and become comfortable talking about it.

I’m not a fan of euphemisms…

In a death-phobic culture, it becomes the norm to use euphemisms—substituting mild, indirect, or vague expressions for those thought to be offensive, harsh, or blunt. Legacy.com, which hosts more than 20 million on-line obituaries, lists the top ten euphemisms used in death notices. If ten isn’t enough, here’s a longer list.

Passed away

Went to be with (the/his/her) Lord

Went home

Departed

Entered eternal rest

Was called home

Left this world

Succumbed

Lost his/her battle

Slipped away

Somehow, the word “die” is culturally perceived as offensive, harsh, and blunt. Yet its actual definition is straightforward: To cease functioning, to stop living or existing, to undergo the complete and permanent cessation of all vital functions.

Verbal tranquilizers?

Euphemistic expressions for death and dying have been described as “verbal tranquilizers” and I think it’s a fair description of how we attempt to avoid what are seen as harsh realities.

In her excellent article about whether euphemisms are helpful or harmful, social worker Esther Heerema says:

…using the word “dead” makes it difficult to deny the reality. And, psychologically, while denial clearly needs to turn to acceptance, a little bit of denial is not all bad as a short-term coping mechanism. Indirect language can sometimes be a helpful way to mentally and emotionally handle your feelings gradually.

She also points out that euphemisms may be used for reasons other than denial. These include protection, to avoid being rude or offensive, to avoid discomfort, to offer spiritual comfort, or because of our own grief.

Her article highlights several considerations, including using euphemisms with children and principles for knowing when direct communication is the best choice.

Using euphemisms when speaking to children about death is usually not recommended. While the intention is to be gentle and protect the child from additional pain, indirect language is often confusing to a child. A euphemism involving terms such as “asleep” or “rest” might cause them to misunderstand and become fearful of going to bed at night. Similarly, saying, “We lost Uncle Fred last night” could prevent the child from comprehending that the person died and instead prompt them to go looking for Uncle Fred because he’s “lost.”

…When you should use direct language: The words death, dead, and dying should be used when it’s important to be very clear about what is happening. This includes when critical medical decisions are being made based on the prognosis of the patient, when speaking with those who might not fully understand indirect language, and when there might be a language barrier that might hinder understanding.

Talking about death over dinner…

Death Over Dinner, an initiative by Michael Hebb, is a deliberate opportunity to talk with others about death. For the past 20 years, Hebb has been working to “understand the secrets of human connection. His projects have turned into international movements and impacted millions. His second book Let’s Talk About Death was published in 2018.”

Why dinner?

You might wonder why anyone would have a conversation about death over dinner. Here’s how it’s explained on the Death Over Dinner website:

The dinner table is the most forgiving place for difficult conversation. The ritual of breaking bread creates warmth and connection, and puts us in touch with our humanity. It offers an environment that is more suitable than the usual places we discuss end of life.

So, it’s an intriguing idea. What I really like is how they’ve created a structure that helps you plan an event tailored to your interest in the subject. After filling in a simple questionnaire, you receive practical planning and hosting help, including

  • Suggested dinner invitation text, including the read/watch/listen resources you chose to share with your guests
  • Proposed conversation prompts for your dinner
  • Post-dinner activities and ways to share your experience with the community

Learn more…

The cool thing is you can try this out even if you don’t go ahead with the dinner. I found it a really good way to gain perspective on the breadth of the topic of dying, to review the variety of resources they have included, and see what conversation starters they suggested. I highly recommend checking it out at deathoverdinner.org

You can get more of the back story in a 2016 article in The Atlantic or the book that was published near the end of 2018. Or listen to Michael Hebb himself…

What do you think?

Would you be inclined to organize a dinner to talk about death? If not, do you wonder why you wouldn’t? That might be revealing…

The business of dying involves more than paperwork…

***Time for this post?  Reading… 1 minute. Viewing…17 minutes. Thinking about it…as long as it takes.

My last few posts have been about several major documents that we should put in place well before we’re at the end of life. But dealing with mortality includes more than signing documents. Important as paperwork is, the human aspect of death is equally significant.

Key points…

When you make your personal (advance) directive, be sure your family is on board. This doesn’t mean they have to agree with what you want. The question to ask them is… Will you honour what I want?

Kit Jackson mentions a small book called Hard Choices for Loving People. I haven’t read it. Here’s where you can find out more.

Five things to say at the bedside of a dying person…

  1. Thank you.
  2. I love you.
  3. Please forgive me.
  4. I forgive you.
  5. Goodbye.

That more or less says it all, I think.

Personal Directive. Why bother?

*** Time for this post?  Reading… 12 minutes. Viewing…13 minutes well spent. Doing the work…take the time while you have it.

A Personal Directive (Advance Directive, Health Care Directive, Living Will) is an important piece of your paperwork. It’s the legal document in which you state your wishes for your personal care and medical treatment…or non-treatment. It only comes into effect if you are found to lack capacity to make personal decisions for yourself.

You need a Personal Directive as well as your Power of Attorney. Although both of them come into effect when you’ve lost your mental capacity to decide for yourself, the Power of Attorney can only address your financial matters. So a Personal Directive is necessary to give authority to someone you trust to make your personal decisions.

It’s about directing how you want your life to conclude…

Jim McDermott is a medical doctor who has seen plenty of life and death. In a compelling TEDx talk, he reminds us of the importance of initiating conversations about how we wish to pass when the time comes. He encourages us to think and act on our own convictions while we can, putting our wishes in writing so they are known by all who will be caring for us.

As Dr. McDermott says, you go to the trouble of documenting your wishes for…
  1. Yourself… so you go in the best possible way.
  2. Your loved ones… to clarify your wishes and prevent emotionally upsetting disputes about what is best.
  3. Your doctors…to free them from their ethic of prolonging life at all cost.
  4. Your wallet…to prevent unproductive expenditures on treatments that make very little difference in the long run.

Making an Advance Care Plan…

Putting your wishes in writing isn’t easy—he’s right about that!

For me, my Personal Directive was challenging because it took a while to find helpful information about how to do it. Not because there wasn’t information, but because it was written by medical people and government officials. The resulting booklets were confusingly clinical. They did nothing to help me think about what life might bring when I’m old and frail…or what I think should happen in such circumstances. Nor did they help me gain a sense of when I would be ready to say “enough is enough.”

Dying with Dignity…

Then I discovered Dying with Dignity Canada, an organization committed to improving our quality of dying, protecting end-of-life rights, and helping Canadians avoid unwanted suffering.

Dying with Dignity has a booklet that is incredibly useful. It walks you through the thinking process by asking a series of questions about what you would want in various scenarios. Here’s an example:

You have congestive heart failure. You are always short of breath. Your swollen ankles make walking difficult. But your mind is still sharp and you enjoy time with family and friends. One day you have a severe heart attack and your heart stops beating. Do you want 911 called and CPR started?

[  ]  Yes

[  ]  No

[  ]  I am uncertain

Their questions helped clarify my thinking. But they take it one step further, and recommend also using the questions to initiate conversation with those who will be in charge of decisions about you. To do this, they suggest giving a blank copy of the questionnaire to your agents and family members to answer the way they think you did. Comparing their answers to yours shows the discrepancies, giving you a chance to discuss and clarify your wishes. In so many cases, this sort of conversation is the missing piece in end-of-life preparations. The questionnaire process facilitates it beautifully.

You can find their planning document at the Dying with Dignity website. If you live in Canada, scroll to the bottom to find the version tailored to your province’s legal requirements. If you live elsewhere in the world, pick any province and use the booklet for the thinking process. Then do some research to learn about the legalities and appropriate forms where you live.

Some practical information…

  • A Living Will or Personal Directive does not apply to your financial decisions. It only applies to personal decisions—those about where you will live and what sort of medical care you will agree to have in various circumstances.
  • You make your Personal Directive while you are still mentally sound. In it, you specify what you want to happen to you in the time before death, and appoint someone, known as your agent, to speak on your behalf when you cannot.
  • It is a legal document that comes into effect when you have been deemed incapable of acting on your own behalf.
  • When making your Personal Directive, be sure to check the legal requirements where you live. In Alberta, a Personal Directive is optional and voluntary. However, when one is made, it must meet certain prescribed conditions to be legally valid.
  • To be legally binding, a Personal Directive must be signed, dated, and witnessed. A lawyer can do it for you, but that is not necessary as long as you research the legal requirements and follow them carefully.
  • Your Personal Directive is not written in stone. You can change your mind and write a new directive at any time. Since it does not require assistance of a lawyer, it won’t cost anything except your trouble in arranging for someone to witness your signature.

  • In Alberta, a witness MAY NOT be the person you named as your agent, the spouse or partner of the person you named as your agent, your own spouse/partner, or anyone under the age of 18 (the age of majority).
  • The witness is not required to read your document or approve its contents. The witness is there to actually see you sign the paper. That means you must complete the document except for your signature before meeting with the witness. You sign first, and then the witness signs. If ever asked, your witness would be able to swear that he or she saw you sign the document.
  • Before meeting with the witness, make several copies of the unsigned but complete directive form. Both you and the witness sign each of the copies. this means that you and your agents each have a document with original signatures, which will be helpful when they need to use it.
  • Once your Personal Directive is signed and witnessed, you may want to make copies and send them to your family. This is not legally required but will help ensure there are no misunderstandings about what you want. You may also wish to leave copies with your doctor, lawyer, and/or clergyman.

Another angle to consider…

Dementia presents a unique situation because it can take 5 to 20 years for the end of life to arrive. You might want to give thought to the kind of medical care you would want at various stages if you were to develop worsening dementia.

I recently discovered an excellent health directive for dementia with clear and direct explanations. It was developed by Dr. Barak Gaster, a medical doctor who teaches resident physicians in the clinic at the Memory and Brain Wellness Center, University of Washington. He knows a lot about the ramifications of dementia.

His Dementia Directive Form  is available free. I have just made my choices, signed and dated it, and attached it to my main Personal Directive. If you don’t yet have your Personal Directive completed, at least do the dementia directive and file it with copies of your Will and Power of Attorney. (More about what to do with all your documents at another time.)

For more about Dr. Gaster and why he thinks this is important, check out this article in the New York Times. In part, he says…

The standard advance directives tend to focus on things like a ‘permanent coma’ or a ‘persistent vegetative state,’” Dr. Gaster said. “Most of the time, they apply to a person with less than six months to live. Although it’s a terminal disease, dementia often intensifies slowly, over many years. The point at which dementia patients can no longer direct their own care isn’t predictable or obvious.

That just gives you the flavour of what a dementia directive is about. It’s worth considering.

PS I just printed the graphic with the stars and attached it to the front of my directive because I felt the document was still lacking in the spirit of what I want. I think this does it! If you’d like to print the page I used, click on the image below.

PPS Laws vary between provinces, states, and countries. I’m using information from where I live to illustrate principles, but you will need to check the details in your jurisdiction. The Internet is a good place to start.

Seize the opportunity…

**Time for this post? Reading…8 minutes. Viewing…5 minutes. Implementation…undoubtedly the hardest part.

Seize what opportunity?

I’m thinking of the holiday advantage of having family members all together at some time during the season.

And do what with that opportunity?

Use it as a chance to talk about your wishes for body disposition when you are no longer using it. Or—if you are an adult child of living parents—it’s a chance for you to find out what they want.

What would I talk about?

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