Solutions Through Compassionate Communication.
Usually I toss my copy of the annual Medicare and You Handbook into my ‘read file.’ But with our book coming out in January (see below), I carefully reviewed this year’s issue. Its 122 pages are chock-full of information on coverage like chronic care management services (p.34) and yearly wellness visits (p.49). But the following three items, I believe, merit special attention.
Tough Conversations is pleased to feature an article by Guest Blogger Susy Murphy who is a respected Aging Life Care Manager and Owner of Debra Levy Eldercare Associates in Maryland.
Making The Difficult Decision to Move a Family Member to Assisted Living or Memory Care
(reprinted with permission)
One of the most difficult decisions that any family faces is making the decision about when, or if, moving a family member to assisted living is the right thing to do. As Aging Life Care™ Managers, this is often when we are called on, whether to schedule an office consult with concerned adult children to discuss options or to meet with a spouse in their home and assess whether or not their husband or wife can still be safely cared for there. It is nearly always an emotionally fraught decision. Sometimes adult children promised their parents that they would “never put them in a home,” whatever that may mean in today’s world where some skilled nursing facilities actually more closely resemble a Hilton Garden Inn with nurses, and long before being faced with the realities of a difficult diagnosis, such as Lewy Body Dementia. [Read more…]
Now some of you may laugh at this question and others of you may be nodding your heads in complete understanding. Honestly, this is a question I was asked earlier this year at a community presentation and the person asking it was very serious and concerned. Superstition is alive and well in the world in which we live and when it comes to dying no one wants to tempt fate. Believe it or not, this is also one of the reasons why people do not complete a financial power of attorney. They are afraid that if they do, it will be needed immediately and they are doing just fine anyways, thank you very much.
We are all driven by our culture and the world in which we live and were brought up. Superstition is defined as “a belief or notion, not based on reason or knowledge, in or of the ominous significance of a particular thing.” How true it is. Death has such ominous significance for most of us but the key point is that it is a belief not based on reason or knowledge. My hope is that I can help people over this hump to the point of realization that their fear is unrealistic so that they can move forward and complete their advance care plan and give the gift.
As I mentioned last month, death, serious illness, and injuries do not happen only to the elderly but also to young people and even children. It occurs when it does, unaffected by whether a plan is in place or not. And that is extremely important because if your plan is not in place then you have lost control because no one will know what your desires are. You will not have had the conversations that are so necessary in allowing people to treat you as you wish to be treated. You will leave a huge burden on your friends and loved ones as they try to guess the best direction for your care and wonder if they are doing what is right for you and what you would have wanted.
So don’t let superstition drive your direction. Talk to your loved ones, tell them what is important to you, and share your feelings and beliefs so that you can help them along the way to helping everyone do the right thing. If you need assistance in working through these discussions or your superstitions, we would be happy to help. That’s what we do. If you can do it on your own, go forth and get it done. The most important thing is that you have the conversation and document your desires in your advance directives for everyone to see and use.
Have ‘The Conversation’
And
Give ‘The Gift’
Copyright © M Jane Markley Consulting, LLC. All Rights Reserved
www.mjmarkley.com (301) 744-7656
Sig notes: A registered nurse with more than 30 years’ experience helping people deal with ethical issues in both healthcare and business, Jane Markley is a board-certified healthcare executive who has chaired and works on hospital ethics committees; speaks and consults on advance care planning and ethical dilemmas; and teaches ethics in both healthcare settings and corporate environments. Check her website, www.mjanemarkley.com.
Last week Sig asked: If you had a fatal illness, who should tell you? Your doctor? A loved one?
How should they say it?
My Dad, 93, was slowly dying. His body was riddled with the prostate cancer he’d lived with – and minimized — for 20 years. He’d signed an advance directive (“no extraordinary measures”) and a health care power of attorney. But he’d made clear that his own death was not a topic of discussion.
One afternoon he told us to call an ambulance. “I just don’t feel right,” he said.
Early next morning, in the hospital, he suffered a massive heart attack. A doctor met me in the hall. “He doesn’t know what happened. We don’t want to frighten him. There’s nothing we can do. We’ll make him comfortable. He might last 24 hours.”
I was sad but not surprised. Dad had fought the good fight. I went in to hold his hand.
He was alert, even cheery. He pretended nothing had happened. “I feel pretty good,” he said through his oxygen mask. “I hope the Redskins win tomorrow.” Denial, full strength. He was not going there.
But a few hours later he asked, “Why aren’t they treating me?”
I tried, “Well, Dad, maybe there’s nothing they can do.”
He was furious. “I’ll fire them and get a new doctor!” He tried to climb out of bed.
When a female doctor appeared a couple of hours later I privately asked her to tell him.
She was kind. She sat beside him, at eye level. She was indirect and used a lot of silence to let him absorb each sentence. She emphasized the things he could control.
“Mr. Miller, your daughter tells me you’re wondering about treatment.” Pause. He nodded. “You’ve suffered a heart attack.” Pause. Nod. “It wasn’t a little one.” Longer pause. “I’m afraid it did a lot of damage. . . . . . We can’t fix it.” A really long pause.
“And you know you also have cancer. . . . . that has spread,” she continued. “That’s why you can’t keep food down.” More silence.
Finally, from Dad, “How long?”
“Not weeks.” [Her phrasing astonished me.] . . . . “Is there anything you need to do?”
Dad looked at me. “No. You’ll take care of Mom (in a nursing home with advanced Alzheimer’s), you know about the money . . .” Then he described the funeral he wanted.
The doctor told him he could choose hospice, he could control his pain medication, and he could decide whether he wanted to go home or stay where he was.
When she left, Dad said, “She said I have two weeks.” Nobody argued with him. He lived four more days.
Carolyn Parr
How do I want to die? Where do I want to spend my last days? And with whom? These are some of the questions thoughtfully posed by the award winning documentary, “Consider the Conversation.”
This 2011 production is a rare find. Consisting of interviews with hospice workers, doctors, an ALS patient, and numerous others, it raises profound questions about how we both hope and plan to spend our final days.
In an accompanying study guide (www.considertheconversation.org) the producers state that their goals include changing the commonly held American view that end-of-life is a failed medical event rather than a normal process rich in opportunity for human development.
Second, they seek to inspire dialogue between patient and doctor, husband and wife, parent and child, minister and parishioner.
Third, they want to encourage medical professionals, healthcare workers, and clergy to take the lead in counseling others about end of life issues.
The documentary does not offer answers. Instead, it provides questions all of us need to contemplate and answer for ourselves. The film elegantly aligns these questions with the concept of advance care planning which is all about talking with patients and loved ones about their end-of-life wishes, documenting them, and taking action to ensure they’re honored.
Other questions the film asks are: At what point is the quality of life no longer worth the emotional and physical costs of maintaining it? When is it OK to acknowledge that one has fought the good fight and it’s now OK to accept moving to the next phase? Have we had a tough conversation with our doctor about end of life planning? Will our doctor be honest and courageous enough to tell us when there is no more she can do and not consider that a medical failure but a fact of life? When is enough, enough?
Every so often we find a resource that challenges us to engage in a Tough Conversation. So it was with Five Wishes which provides a caring and intelligent approach to creating a Living Will. How to Say it to Seniors by David Solie is another gem that guides our thinking about what it means to be an elder and how to communicate effectively with elders. And so it is with Consider the Conversation, a thought provoking journey into what too many of us consider taboo territory.
For PBS listing or to purchase the film see www.considertheconversation.org.
Sig Cohen
What can be harder that engaging a parent or close friend or relative in a discussion about his or her end-of-life care? This may be the toughest of conversations. Yes, even harder than the one we dread about a parent’s no longer driving.
Unless a parent or loved one initiates a conversation about his or her end of life care, we may avoid the topic, fearing it’s too insensitive or emotional. But if we wait until the person is incapacitated, final decisions may be made by strangers – and the result may not be one that our loved one would have chosen.
Thankfully (yes, we mean it: thankfully) the Obama Administration has issued a rule authorizing reimbursement of doctors who counsel their patients about end of life care. Note that these discussions are voluntary. The government does not require such conversations. But importantly doctors may include an explanation of advance directives (sometimes called “living wills”) by which a patient requests or foregoes life-sustaining treatments under certain circumstances. Doctors may also discuss end-of-life options such as pain management or hospice care. In this way a doctor will learn how his or her patient wishes to be treated if they should become too sick to decide for themselves. It puts the patient in control.
We believe this is a boon for families who have avoided such ‘tough conversations’. Now medical professionals (who are usually best qualified to discuss the issue) may engage in these conversations knowing they will be reimbursed for their time and hearing first hand what kind of care their patients desire when and if they can no longer communicate their wishes.
Contrary to what some fear, research published in the British Medical Journal found that advance care planning actually improves end of life treatment, increases patient and family satisfaction, and reduces stress, anxiety and depression among surviving relatives.
According to Dr. Sharon Brangman, President-Elect of the American Geriatrics Society and Chief of Geriatrics, SUNY Upstate Medical University in Syracuse, NY, end-of-life consultations could also save the healthcare system money by eliminating unnecessary testing and procedures that patients don’t want. But that’s not why she (and we) support it. The focus is really on ensuring that patients’ wishes are known and met.
Sig Cohen