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Palliative Care: Pros and Cons

March 19, 2018 By Carolyn Parr 1 Comment

When my father was 93, riddled with cancer, chronically nauseated, and living on opioids he suffered a major heart attack. In the hospital, doctors determined his death was imminent but didn’t tell him. Dad denied his condition was serious. He was furious to be given a room on the heart ward instead of the ICU.

Dad had signed a DNR (do not resuscitate) and disclaimed extraordinary measures. But he changed his mind when push came to shove. He raged for two days until, at my request, a female resident physician sat beside Dad’s bed and gently told him the truth. Then he agreed to accept palliative (comfort) care. He needed to hear his time was short and he could control how it was spent.

Palliative care (with or without Hospice) can be received in a hospital, a nursing home, or the patient’s own home. This care focuses on comfort and pain relief. Surprisingly, comfort care often extends a seriously ill patient’s life beyond expectations, perhaps because it allows him to set his own priorities as the end approaches. He might continue to attend church, meet a new grandchild, participate in a daughter’s wedding, or celebrate a family holiday. [Read more…]

Filed Under: Blog Tagged With: Hospice, talking about death

When Is It Time?

May 26, 2016 By Carolyn Parr Leave a Comment

 

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)

When is it timeOne 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…]

Filed Under: Communication, Family Matters Tagged With: advance directives, aging, Alzheimers, Caregiving, communication, Dementia, elder care, family communication, Final wishes, Hospice, Powers of Attorney, speaking to elders

Talking to Grief

October 7, 2015 By Carolyn Parr 2 Comments

by Carolyn Miller Parr

Talking to GriefWhat can you say to the parent of a 17-year-old son who dove into a wave this summer and came up paraplegic? Or your 53-year-old family member who suddenly discovers he is riddled with cancer? Or “Sarah,” a church friend, who will soon celebrate her 56th wedding anniversary, holding her husband’s hand and watching his slow but unstoppable surrender to dementia and death?

Recently I have felt surrounded by grief. It knocks at my own door and I see it everywhere. I can smell it, touch it. Anyone who watched the Pope’s visit on TV saw plenty of it. He waded into it: immigrants, homeless people, prisoners, babies attached to oxygen. Francis knows how to speak to pain.
[Read more…]

Filed Under: Blog, Communication, Family Matters Tagged With: Caregiving, Carolyn Parr, communication, death, death and dying, Family, Hospice, talking about death

A Book to Make You Laugh, Cry and Ponder

June 25, 2014 By Sig Cohen 2 Comments

Sig Cohen, http://toughconversations.net/, shares his opinion of a book by Roz Chast.The New Yorker magazine cartoonist Roz Chast’s Can’t we talk about something more PLEASANT? evoked a range of emotions as I absorbed her insightful, witty – but essentially sad – chronicle of her parents’ final years.

What Chast reveals is more than a description of her tortured web of (mostly negative) feelings for her mother; her sympathy for her dad; and more than a step-by-step dissection of her parents’ slide from independence…to assisted living…to nursing care…to hospice. In essence, she details her parents’ decline from a unique ‘only-child’ perspective.

Chast’s intensely graphic depiction of her parents’ agonizingly slow, and at times emotionally draining, transition is both touching and exasperating. [Read more…]

Filed Under: Blog, Family Matters Tagged With: Assisted Living, Elderly, Hospice, Life Planning, Nursing Care, Parents, Roz Chast, Sig Cohen, tough conversations

Reaching informed Decisions about End of Life Planning

June 24, 2013 By Carolyn Parr Leave a Comment

I recently learned that a dear friend has chosen hospice care over yet another round of debilitating chemotherapy. It was an enormously tough decision for her and her family. She’s not that old (66), and her zest for life is infectious to all who know her.

Thousands of Americans confront this decision every day. Most say they want to die at home, yet 75 percent end up dying in hospitals or nursing homes. More often than not they opt for hospitalization, I believe, because they and their family members are unaware of the risks involved with aggressive, expensive treatments that may rob them of their quality of life. Did you know that such life-prolonging care accounts for 30 percent of total Medicare spending? Astounding!

Now, imagine if you could view short videos that graphically depict what happens when you undergo emergency, life saving measures that risk robbing you of any quality of life and could result in your remaining in a hospital until you die.

These short films demonstrate what goes into such treatments as emergency CPR and breathing tubes. They have undergone rigorous review by leading experts in medicine, geriatrics, oncology, cardiology, ethics, and decision-making. Clinical studies show that patients who have viewed these videos have overwhelmingly opted out of costly, life-prolonging treatment.

Produced by a nonprofit foundation comprising clinicians dedicated to educating patients about their choices for medical care, they are used by 40 healthcare systems throughout the US. One healthcare officer commented that the videos “help physicians, their patients, and their patients’ families address the issues they need to face around end-of-life care, and make more informed decisions.” Another reported that the videos “…ensure that patients have the information they need to be active in shared decision-making, and to help physicians understand patients’ values and preferences so they can arrive at the right decision together.”

For more information check www.acpdecisions.org. ACP Decisions was founded by Drs. Angelo Volandes and Aretha Delight Davis.

Sig

Filed Under: Uncategorized Tagged With: End of Life Planning, Hospice, informed choices about medical care

4 THINGS DYING PEOPLE (AND THE REST OF US?) WANT TO SAY – AND HEAR

August 6, 2012 By Carolyn Parr 4 Comments

Please forgive me.
I forgive you.
Thank you.
I love you.

In his book, “The Four Things That Matter Most” hospice specialist Dr. Ira Byock writes that these are the words that dying people long to hear and say to those they love.

We might be able to say them to a dying person we love. But, as Dr. Byock says, they can also change our relationships with the living.

But sometimes they’re very hard to say. Why? Because we may appear weak or even vulnerable.

My dad found it hard to say, “I love you.” I think for him it didn’t feel “manly.” But in his 90’s he wrote in his journal, “I sure do love Carolyn and Jerry.” Then he handed it to us to read!

Vulnerability can be tough. Do we feel we’re putting ourselves in a “one down” or “one up” relationship? For instance, a parent may have trouble apologizing to a child. Or a boss to an employee. Will admitting we were wrong diminish us in the other’s eyes?

Will we lose face?

Are we afraid to be hurt or rejected if we reveal our feelings?

What if I apologize and the other person refuses to forgive me?

What if I express love and the other person remains silent?

What if I thank someone and he says, “It’s about time!”

What if I tell someone I forgive them and they say, “I didn’t do anything wrong. You’re too sensitive.”
(Note: It’s a wonderful idea to forgive, but not so good to say so unless/until the other person expresses a need to be forgiven!)

I invite readers to say which of these is easy and which is hard for you. And why. For myself, just for today I’m going to try to speak a little more courageously with my nearest and dearest!

Carolyn Parr

Filed Under: Blog Tagged With: forgiveness, four things, Hospice, Ira Byock, saying goodbye, talking to the dying, what I wish I'd said

Breaking the Bad News (Cont.)

April 23, 2012 By Carolyn Parr 2 Comments

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

Filed Under: Blog Tagged With: advance directives, death and dying, denial of death, fatal illness, health care POA, Hospice, talking about dying

SAYING GOODBYE

February 27, 2011 By Carolyn Parr 2 Comments

After several years of trying chemo and radiation to check her cancer Rebecca decided to die with dignity. She consulted with her family and some close friends and then contacted the nearest hospice. Whatever ‘tough conversation’ there might have been was brief, open, and honest. How could anyone object to her decision after all the various treatments that Rebecca had undergone?
Everyone was in the loop. Family, close friends, some neighbors and a few former colleagues. When Rebecca became so weak that she could no longer eat or take care of herself, we all knew it was time. I recall Rebecca’s last cognitive act was to view a DVD of her grandson performing in a piano recital. Then she rested grateful for having viewed her grandson’s artistic triumph.
For the 3 or 4 weeks while she rested, a constant stream of family, friends and neighbors visited with Rebecca. She lay in her furnished basement apartment. Soft music penetrated the space. A scented candle burned. Each visitor brought his or her own special treatment ‘modality.’ Some sang, others massaged her limbs, a few talked quietly reminiscing about happier times they had spent together.
What was so impressive was the solace that pervaded the room. Except for the early hours of each day Rebecca was never alone.
When she died, everyone was at peace…with her and with themselves. We felt sad but not depressed. I learned that her last breaths were labored and short. Then nothing. We all shared a part in Rebecca’s passing. She gave us a bond that we will never forget.
Our gratitude to Rebecca is boundless. She allowed us to take part in her vigil of peace.

Sig

(c)Beyond Dispute Associates 2011

Filed Under: Blog Tagged With: dying at home, Hospice, peaceful death

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