Posted tagged ‘end of life’

Hope for a change

February 25, 2016

by Andrea Powell, HPCCR Marketing Manager

AtulGawandeThere are often stereotypes that accompany surgeons. I can’t say for sure that the stereotypes hold any weight because I simply haven’t met many surgeons. But isn’t there usually a reason that stereotypes exist? Who knows. Anyway, this is what I’ve heard about surgeons: brash, cold, confident (verging on cocky), brilliant, terse, aggressive.

The surgeon I listened to last night was none of those things. Except brilliant.

Yes, Dr. Atul Gawande is a surgeon. But he’s also a professor (at Harvard) and an author. His most recent book, Being Mortal: What Matters in the End is on the New York Times Best Seller’s List and has been for months. The man knows his stuff.

He came to Charlotte to participate in the Learning Society of Queens (University) lecture series. HPCCR was one of the presenting sponsors for his presentation last night and I was lucky enough to score a ticket.

Dr. Gawande has been thoughtfully considering end-of-life issues since he was a junior surgical resident. Over his many years in medicine, he has seen various outcomes for patients, ranging from aggressive measures to comfort care. He believes that everyone has a right to make their own decisions about what they want to do in the face of terminal illness — that was not the focus of his remarks last night.

What needs to change, according to Dr. Gawande, is the approach of physicians.

Physicians need to be better about asking patients what their priorities are, he says. They come in and talk to the patient but, in reality, their time talking needs to be cut in half. What should doctors be doing instead? Listening.

These are the questions that should be in their arsenal: “What is your understanding of your illness right now?”; “What are your goals if time is short?”; and “What are your fears?” Getting the answers to those questions will help determine the best course of treatment. It will get to the root of what kind of quality of life is acceptable. Because, in our job, it’s all about quality of life.

Dr. Gawande told the story of a hospice nurse who said something to him one day that stopped him in his tracks. She was in the room, doing a million things at once — adjusting pillows, adjusting meds, taking vitals, changing lines. In other words, she was totally focused on the needs of the patient. When Dr. Gawande remarked on her level of activity she said, “You’re a surgeon. Your job is to sacrifice time now for time later. My job is to give people their best possible day today.”

Ultimately, it was an inspiring evening. Dr. Gawande gave the room hope that we, as a society, are moving into an age where we can be comfortable with death. He talked about a new generation of physicians who won’t accept practicing medicine in the “traditional” environment we’ve had for so long. Dr. Gawande believes that we will soon see an entire cadre of young clinicians who believe they can be part of the solution rather than part of the problem. And we, as future patients, can do better too. He ended with, “If we define clarity about our goals and we all respect them, I think we can have extraordinary change.”

It’s happening, folks. Change is coming. The sheer fact that a surgeon talking about end of life sold out a one thousand-person theater speaks volumes about our current appetite on this topic. And those young clinicians our renowned speaker anticipates? They are going to smash the surgeon stereotypes; they are going to rewrite the job description. They will be like Dr. Gawande– thoughtful, kind, compassionate, communicative. They’ll be all those things and more. They’ll be brilliant.

 

 

 

A final message

December 30, 2015

by Andrea Powell, HPCCR Marketing Manager

thank you 2014As we enter the final days of 2015, HPCCR has an important end-of-year message for all of you.

Thank you.

Because of the support from friends, patients we’ve served, and the loved ones of those patients, we have had a wonderful year.  And just so you know, our definition of a wonderful year is being able to make a difference in our community.

What does that look like?  Well, it means helping patients spend their last days, weeks, and months in comfort.  It means being a supportive resource to frightened family members and exhausted caregivers.  It’s educating families about when the time is right for hospice care to give them the benefit of much-needed additional help.  It’s providing grief support to bereaved family members after their loved one has died.  And it’s offering education to our community about end-of-life planning and other equally important topics.

We did all those things in 2015 and we did them with care, compassion, and integrity.

We thank each and every one of you who talked about hospice care and helped us further our mission of spreading the word.  We thank the families who allowed us into their homes; who gave us the honor of caring for their loved ones at such an important time.  We thank those of you who followed us on Facebook and Twitter, kept up-to-date with the goings-on of our organization, and attended our fundraising events.  And we appreciate all of you who read the inspiring stories on this blog, commented on them, or even shared them.

Bottom line?  End-of-life care is a true blessing.  But it takes people accessing it, talking about it, and learning about it so that it can become a more widespread and understood option.  You helped us do that in 2015 and we know that you will continue to do so in the coming year.  For that you have our sincere gratitude.

Best wishes for a wonderful 2016!

A lovely bench

September 30, 2015

by Andrea Powell, HPCCR Marketing Manager

Kapustin benchA lovely bench sits in the courtyard of Levine & Dickson Hospice House at Southminster honoring the memory of a beloved husband, father, and grandfather. Rafael Kapustin came to the hospice house in September of last year and spent his final days with us, finally free of the pain that had plagued him for so long.

Residents of Miami, Rafael and his wife Sara came to Charlotte so that Rafael could participate in a trial at the Levine Cancer Institute. They chose Charlotte because their son Andrew lives here with his lovely wife and beautiful children, all of whom would be able to visit Rafael and Sara as often as they’d like.

So from April until September 2014, Rafael endured the treatment. He spent quality time with his family and he followed the trial protocol.  He relished in the proximity to loved ones and gave every last family member memories to forever treasure.  More importantly, he was able to achieve an important life goal he had set upon entering treatment: witnessing the bar mitzvahs of his twin grandsons, which he joyfully did just one month before he died.  At the end of September, however, with his pain escalating, he opted for comfort care.  Upon the recommendation of his doctor, he came to Levine & Dickson Hospice House at Southminster.

Rafael spent a restful week there with his family. He had welcome relief from his pain and passed away peacefully after many visits from friends and loved ones. His family was so appreciative of his week there that they purchased a bench in his memory and placed it in the courtyard. Just last week, almost a year exactly after his death, his family gathered once more at Levine & Dickson Hospice House at Southminster for a dedication service. The service was full of wisdom and warmth, qualities that Rafael always embodied and that his family truly cherished.

A lovely bench sits in the courtyard of Levine & Dickson Hospice House at Southminster.  And  thanks to the Kapustin family, it will offer a peaceful and welcoming spot for loved ones for years to come.

For information about making a gift to HPCCR in memory of a loved one, contact our Development department at 704.375.0100.

Removing the line

July 16, 2015

by Andrea Powell, HPCCR Marketing Manager

draw-the-lineI read an article today that perfectly illustrates an important point that hospice organizations always try to drive home: hospice care is about what the patient wants.  It’s glaringly obvious when you read this insightful piece that sometimes what the patient wants might be completely unexpected and furthermore, might be in conflict with what the physician wants for that patient.  The truly compassionate doctor, however, will bypass their own judgments and opinions and do everything possible to accommodate the patient’s wishes.

The author, a hospice and palliative care physician, tells the story of “Ms. Weatherby”, a 57-year old hospital patient whose lungs had stopped working due to various diseases.  Ms. Weatherby was intubated, meaning she had a tube inserted into her throat and down her trachea, to help her breathe.  To say that intubation is uncomfortable, both physically and mentally, is an understatement.  But there was more.  She also had a feeding tube (through her nose) and a myriad of other tubes to help her with other daily functions.

Now, if this were me, I’d be miserable.  But apparently Ms. Weatherby was in fantastic spirits, very positive, and had her laptop open along with blank journals surrounding her, ready for her pen, so that she could communicate with her family and friends.

After several days in the hospital, the doctors were able to take the breathing tube out for a short period of time.  Ms. Weatherby was asked if, when her lungs weakened again, she would want the tube reinserted.  Her response?  An unequivocal yes.

Ms. Weatherby’s other doctors were incredulous.  They simply couldn’t understand her decision to be drastically uncomfortable during the brief amount of time she had remaining.  But her hospice physician wrote something in the article that resonated in its simplicity and virtue.  She said, “When advanced life support becomes comfort care, where do we draw the line?  Based upon what I learned from Ms. Weatherby, I would argue that palliative care begins by removing the line.”

So simple.  So profound.  So right.

Apparently, Ms. Weatherby had important work in front of her yet to be finished.  She had a broken family at odds with each other and she wanted to fix that break before she died.  That was much more important than the discomfort in her lungs and the fact that the rest of her frail body was slowly shutting down.  So in the short time she had left, she chose to be kept alive with all that medical technology had to offer, taking pure delight in very simple comforts — the ability to brush her teeth, warm socks on her cold feet, and communicating with the people she loved.  For her, that was enough.

I think the last thing any of us would want before we die is to be criticized for the final decisions we make.  Honoring last requests, no questions asked, is a very basic right as far as I’m concerned.  Ms. Weatherby’s hospice physician would maybe not make the same decisions if placed in that particular scenario, but she unfailingly honored her patient’s wishes.  She removed her judgments and biases from the equation.  And thus, she removed the line.

Is this my last chance?

April 8, 2015

by Jim Young, HPCCR Volunteer

OLYMPUS DIGITAL CAMERAI have been volunteering for HPCCR for over five years.  Believe me when I tell you that I have personally received a lot more from the experience than I have given.  Recent events in my personal life, however, have me questioning my commitment to this cause that I have never questioned before.  I find myself asking, “Can I keep my commitment to do this anymore?”  Maybe some of you have asked the same question as we all seem to get pulled away from our commitments, and even worse, our personal commitments pull us away from the ones who depend on us to be there.

One of the many lessons I have learned from my time with hospice is that you may only have one chance to interact with a patient or loved one.  You may have only one chance to see a smile, or share the tears of a moment, whether it be happy or sad.  And finally, you may only have one chance to walk with someone special who will teach you about life in just a few steps, or maybe they will teach you what is truly important in the walk of life.  It isn’t their worldly possessions, or the places they have been, or even their accomplishments throughout their lives.  It is the quality in the essence of life, and the people who have shared that essence. It’s an amazing perspective from a place where life meets with death, or a place where life exists but the memories are long gone.

In hospice, time could be the deciding factor in that one chance for a doctor, nurse, or a volunteer to make a positive impact on that patient (or loved one or friend) before death comes — a foe that cannot be defeated, who has no mercy or understanding , a cancerous enemy taking loved ones without warning or reasoning. This is the question I keep asking myself: “Have I had my last chance?”

I hope and pray that all who read this have the same passion I have when it comes to this war that cannot be won.  But I know the battle can be fought without surrender, that we can fight this battle against cancer, dementia, fatigue, despair, sickness, even anger and frustration.  We simply have to offer our commitment to the needs of others, compassion and understanding in the face of confusion and hopelessness, and our love for this wonderful and noble organization in order to step through the fears of death.  Then we can see the life that still shines brightly, the essence of life that evolves into a beacon in the search for peace.

We all have our commitments to our own families, and our own lives, but we also have a commitment to contribute to the good of the world because of the blessings we have each have been graced with.  My faith and my heart will guide my thoughts as I ask God, “Can I have another chance to embrace those on the edge where life meets death?”  I hope and pray I will have that chance.

“Thank you” goes both ways

February 25, 2015

by Andrea Powell, HPCCR Marketing Manager

thank you 2014At Hospice & Palliative Care Charlotte Region, we get thank you notes every day.  They are beautiful, heartfelt expressions of gratitude, written by loved ones, and reading them makes our job a whole lot easier.  I’ve said before that caring for patients at end of life is a calling for our clinicians, but that’s not to say it doesn’t take a toll emotionally.  We have hearts.  We get attached to patients too.  And saying goodbye isn’t easy for us either.  But reading these notes keeps us going.  The words on the paper make us realize that what we do is special.  Meaningful.  And always appreciated.  Here are just a few tidbits:

From a niece: “I did not have a positive experience with hospice care during the loss of my father in Virginia and was somewhat skeptical about hospice care here for my aunt.  I am so glad our doctor referred my aunt to HPCCR.”

From a daughter: “This was our first experience with hospice and we were very impressed with the care and comfort given to our mother.  Attention was paid to every detail for her and the family.  You were honest with us and made helpful suggestions.”

From a family: “Thank you for helping our family through the most difficult time of gradually and painfully parting with the most gentle husband and loving father.  Each member of your team has been kind, supportive, and thoughtful every step of the way while providing only excellent care.”

From a husband: “Without you, we could not have made it with so few scars.  You showed us the way and provided the knowledge and caring services.”

From a daughter: “You are helping us to get through this difficult time in our lives, watching and loving our precious mother as her health declines and she slips away from knowing us and remembering her own vibrant life of 97 years.”

From a husband: “The feeling of confidence which you instilled came not only with supplies and medication, but with the sense that your very personal attention and true understanding of the total situation was always only a phone call away.”

From a son: “I got to spend every second of the last week of my mother’s life with her because of all of you and that is a gift I can never repay.  So I hope ‘thank you’ is enough.”

These notes show gratitude to us, but what these precious, grieving family members don’t realize is that we should be thanking them.  Because these notes remind us why we do what we do.  They refuel our capacity to offer love when our compassion tanks run low.  Their words demonstrate the faith and trust that was given to us; they boost our spirits and renew our dedication to our mission on a daily basis.  You really can’t put a price on that.