Supporting Mom through the Night of her Death had Similarities to Assisting Mothers in Labor

My little Mom died this morning at 5:58 a.m. The night reminded me of my years of attending women in labor. Intense and personal, I think her death "went" as well as it could have gone.

Mom and Dad - married for 50 years.
He died over 20 years ago.

My mother was nearly 97 - healthy up until April when she had two falls resulting in three fractures, and the need for a change in care from Assisted Living to an Adult Family Home. She was hospitalized a couple of months ago with a urinary tract infection - which highlighted the degree of her declining kidney function. (She was admitted with an eGFR of only 11, improving to the high 20's by the time of her discharge - and after considerable rehydration.) We all knew that Mom couldn't sustain this degree of hydration. She hated being in the hospital, pulling out her IV and begging to know, "Why are these women trying to hurt me?"

My sister and I decided to involve the Palliative Care/Hospice Team. They'd provide the care that could be provided in the Adult Family Home, with the intention of delivering comfort - not cure.

 

Mom holding me in 1951, with sister Bonnie looking
"delighted" about my very existence!

 



Mom was treated as an outpaient for another UTI. Then, about 10 days ago, she began to show more confusion - and an ominous loose cough. This was pneumonia. Strong antibiotics, adjusted for her decreased renal capacity, didn't work.

The cough grew more tenacious, and Mom grew weaker. She pushed away the oxygen that was offered, and pursed her lips together when food and fluids were attempted.

On Sunday morning, my mother told me I looked pretty (something she wouldn't typically say). She had sweet visits with my sister, her granddaughter Michelle and great grandson Mason - and, of course, with my son Tim.

Great Grandma Florence gets a visit
from Mason

But early Monday morning, Mom had no more words for me - just a sad straight-ahead gaze. Her focus was locked on the work of breathing.

I moved through my clinic day, seeing patients and checking in with my sister by phone. I arrived at the Adult Family Home at 8 p.m. Mom looked more "serious" than she had that morning: still no eye contact. Everything she had was invested in breathing. I settled in for the night - just as I often did when I was delivering babies.

I delivered hundreds and hundreds of babies over a period of 18 years - and I had been an OB nurse before that. There are observtions I made in those days that seemed to fit last night's process. For example,

• Birth has its own timetable; there are visual, verbal, and kinetic clues you learn that go beyond knowing the degree of cervical dilation.
• There is a single-mindedness you see in a laboring woman; there is little attention directed externally.
• Birth has a rhythm, a pace of its own; except when intentionally stopped, labor pushes ahead.
• Labor and delivery can be approached by helpers with love and kindness, but it can also be a time of supreme vulnerability.

Last night, I could see and feel the clues; my Mom was in a different type of labor. Her body changed as the process chugged relentlessly on. Her skin became more transparent. There was no external focus. The sounds of her labored breathing reminded me that there was no turning back. We were on the timetable of dying now.

I remember one woman in labor who stood up and announced at five centimeters, "I'm going home, right now. I don't want to do this anymore."

But just as in that situation, turning back wasn't an option. The only way out of this was through it.

The small doses of morphine deposited under Mom's tongue helped settle her breathing. Stroking her fine hair seemed to help, too.

Then I sang some songs: "On Christmas Morn" written by my friend Bob Bost, and "The Moon Keeps Me" (Through the Night)" written by my friend Rebecca Cohen. Finally, an old hymn I remembered from my childhood church choir:

"High o'er the lonely hill, black turns to gray.
Birdsong the valley fills, mist folds away.
Gray wakes to green again.
Beauty is seen again.
Gold and serene again, dawneth the day." (or something like that)

Another half dose of the blessed morphine, and Mom's face relaxed into calm - maybe even a tiny smile. Her breathing shifted again - now soft; not the exhausting, pulling breaths that had forced her tiny upper body into spasmodic contortions.

And then, at 5:58 a.m., it was quiet in the home.

She was beautiful; she was strong. She had gotten through her labor, to some other side. I think we made good choices in advocacy and love.

Take care,
Linda Gromko, MD

Fargo Trip Brings Important Information: Fatal Vascular Access Hemorrhages

I was invited to speak at the 13th Annual Sanford Kidney Services Nephrology, Dialysis & Transplant Symposium September 17. My topic - one of my favorites - was "What My Husband's Kidney Failure Taught Me About My Own Profession."

But I also had a chance to listen to several speakers before returning to Seattle. One was Lynda Ball, MSN, RN, CNN - who spoke about the alarming topic of "Fatal Vascular Access Hemorrhage." Can you imagine?

 

Here are some important take-home points from Lynda's talk:

• Fatal vascular access hemorrhage accounts for 0.4 to 1.6 percent of all ESRD patient deaths annually (230 episodes annually in US)
• 75% had access complications within 6 months (meaning there were some warning clues)!
• The majority of these events occur away from a dialysis facility, e.g. SNF, home, jail.

Lynda stressed the importance of evaluating the patient for access complications such as stenosis, ulceration, infection, and non-fatal hemorrage. She reminded us that it's important to ask the patient, "Have you had any bleeding at your access site since your last dialysis?"

Aneurysms in a fistula can occur from repeated punctures in the same location. The skin can become shiny and smooth, but it is also stretched. The patient is likely to request a puncture at this site because it hurts less - but the skin can become thinned, and can rupture like an inflated balloon!

Any skin breakdown, ulceration, infection, or prolonged scabbing at the puncture site should prompt further evaluation.

Emergency measures in the case of spontaneous access hemorrhage include:

• Direct pressure
• Elevation about heart level
• Calling 911.

Good to know.

When I speak in various locations, I'm impressed with the hard work and sincerity of the people who work in the area of dialysis: people who are clearly trying to make things better for people traveling this tough road of CKD.

Take care,
Linda Gromko MD
PS - Please take a moment to look at my medical practice's updated website: www.QueenAnneMedicalAssociates.com.

Acute-on-Chronic Renal Failure Brings Different Questions in a 96-year-old Mom

My little Mom had been blessed with excellent health until age 94 when she began to show some signs of cognitive decline. She was still witty - really delightful. She had only one health problem: hypertension - and that was well-controlled with small doses of beta-blocker and a mild diuretic. She'd never had a surgery, and except for a brief admission for Atrial Fibrillation, she'd been in the hospital only to deliver my sister and me!

Florence Gromko, at left, with daughters Linda Gromko
and Bonnie Gromko Mearns in December 2013

At 94, she moved into an Assisted Living Community, and did reasonably well until she had a fall in April 2014 - sustaining a distal tib-fib (ankle) fracture. About a week later, she fell again, fracturing her pubic ramus. This required hospitalization and about a month in a rehabilitation facility. She then moved to an Adult Family Home with only six residents and more one-on-one care.

Like so many elderly folks, Mom had diminished kidney function, CKD Stage 3. This was likely due to hypertension - or more likely, to being 96-1/2.

A urinary tract infection took her into the hospital in August. She was very dehydrated from vomiting and diarrhea, and on admission, her creatinine had risen to over 3, and her eGFR was only 12. (You start thinking about dialysis with this eGFR - and with an eGFR of 15 in a diabetic.) Of course, this was an acute situation; vigorous volume repletion got her tuned up to an eGFR in the 20s by the time she was ready to return to the Adult Family Home.

But she hated the whole ordeal: pulling out her IV, and begging me to answer, "Why is this woman trying to hurt me?" - as a very sweet nurse tried to start another IV.

The amount of fluid my Mom received by IV was appropriate, but we could see there was no way on earth she'd be able to keep up with it on her own. Another bout of diarrhea, another few episodes of vomiting, and she'd be sliding down again. I figured she'd be in trouble within a month or so.

When my husband's eGFR was 5, and he was started on emergent dialysis via central line in the setting of Acute-on-Chronic Renal Failure, it made so much sense to initiate the "full court press." With a twelve-year-old daughter, he was hopeful for a successful transplant - and willing to pursue home hemodialysis in the interim.

But with a woman as elderly as my Mom - voting with her behavior by removing her IV lines, and declining the amount of fluid that would protect her volume status, it seemed time for palliative care.

She's still happy and glad to see us. Last week, she was saying, "You've got to have goals. I've got to get things done."

I asked her what goals other 96-year-olds had, and she replied instantly, "Oh, they're all dead!"

Different circumstances clearly call for different interventions.

Linda Gromko, MD

Social Workers Talk About Sex at the Council of Nephrology Social Workers' Chapter Conference in Portland

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Northwest Kidney Centers' Ceremony of Remembrance Helps

It's an annual event: the Northwest Kidney Centers' Ceremony of Remembrance. This is the third one I've attended - and it's clear I'm not ready to stop attending.

It's a simple, meaningful, event. Joyce Jackson, NKC CEO, leads off with a respectful introduction. There's a responsive reading led by the NKC Chaplain and a number of people who occupy various positions in Kidney World.

Then, there was a thoughtful address done by Dr. Andrew Brockenbrough, the Medical Director of the NKC in Kent. Kind, sensitive in his remarks, it was clear that he appreciates the profound impact kidney disease has on patients and families. And he passed on to us the impact that we as family have. As he said, "we're often the reasons why our loved ones went on dialysis in the first place."

After this, there's a ritual. We have the opportunity to come forth, pick up a shiny glass stone, place it into a container of water and say, as I did, "for my husband, Steve Williams." We take another stone as a memento. I now have three.

But there were sons and daughters, other wives, husbands, mothers and fathers, and even tearful staff and volunteers of the Northwest Kidney Centers.

This means something unique to each of us: everyone in that room has a deep and different understanding of the impact of kidney disease. And we didn't have to say a word.

There were happy contacts, too. I reconnected with Gloria Lomax, my dialysis "penpal," whose husband Ted died less than two months before Steve. There were the wonderful nurses and social workers who got us through the really tough times.

Maybe there'll be a day when I won't attend the Ceremony of Remembrance. But it isn't time yet.

Take care,
Linda Gromko, MD
www.LindaGromkoMD.com

What was Sidney the Kidney Doing at the Rat City Roller Girls' 10th-Year Anniversary Bout?

Hey, I know that blue kidney-shaped figure standing in the distance! It was Sidney the Kidney in the stands of the Rat City Roller Girls' 10th-Year Anniversary Bout held in Seattle's Key Arena March 15. 

Don't know Sidney? Here's a picture Sid with Steve, Dr. Thakur, and me at a Northwest Kidney Centers Breakfast of Hope a lifetime ago:

Dr. Smiley Thakur, at left, with Sidney, Steve and me.



Sidney was visiting the Rat City Roller Girls crowd to remind us all that March is International Kidney Month. And to remind us that 1 in 9 people have kidney disease, though most don't know it. Sidney recommended that we all check with our health care provders about our own risk factors and kidney status.

Thanks, Sidney, for reaching out!

Take care,
Linda Gromko, MD

My Recent Visit to Bangkok Kidney Center: Travel if you Can!

I recently had an opportunity to attend a medical conference in Bangkok, Thailand - the trip of a lifetime. Bangkok is enormous - a bustling mix of eight million people, hundreds of glorious temples, and an abundance of tropical sun. The trip from Seattle took twenty hours each way - and it was worth every minute of the journey.

It's sad to recognize that I am more mobile since Steve died, and it made me think, "What would we have done to make such a trip?" Granted, we did travel with our NxStage machine and Steve dialyzed in our hotel during domestic travel. But international travel is more of a challenge. My curiosity led me to consult the concierge at the Anantara Resort where the medical conference was held. He directed me to Samitivej Sukhumvit Hospital (www.samitivejhospitals.com) and to Nisarat Jaidee, MD. A visit to the center was arranged.

With Sirinapa Cheethanaghai at
left, and Dr. Nisarat at right

Dr. Nisarat and the staff welcomed me graciously. They guided me through the
dialysis center: a spotless, airy unit consisting of fifteen dialysis stations. The beds were separated by permanent partitians, not curtains. I recognized the Fresenius dialysis machines - the same type used in Seattle. I imagine that such familiar equipment would be comforting to traveling patents. And clearly, there is an atmosphere of professionalism and respect among the staff.


The staff consists primarily of RNs,
mostly medical-surgical nurses who
have received advanced training in hemodalysis. Central line access and fistula punctures are performed by Registered Nurses at this center. Line infections are rare.

Dialysis patients traveling in Thailand may make advance arrangements for treatment in Sumitivej Sukhumvit Hospital. Treatments are available six days a week, Sundays excluded. As in the US, most in-center patients dialyze three times a week, with treatments lasting four hours. Thailand hosts many patients for surgeries and treatments of all types.

 



Dr. Nisarat and the kind group of nurses explained that kidney disease is a growing problem in Thailand - usually the result of diabetes or hypertension, as in the US. Kidney transplants are encouraged. Home dialysis is generally peritoneal dialysis and is performed by RNs. I also learned that patients rarely ask to stop dialysis.

Near the entrance of the dialysis center was a lovely photo of patient celebrations, i.e., birthdays and such. Clearly, these nurses care deeply about their patients - just as the dialysis nurses in Seattle do!

 I valued my visit with the dialysis staff in Bangkok, and I wouldn't hesitate to have a patient or family member dialyze at the Samitivej Sukhumvit Hospital while traveling in Thailand! How unfortunate it would be to miss a visit to Thailand - truly the "Land of Smiles!"

Take care,
Linda Gromko, MD

Check out the Series from Jane McClure and me on Home Dialysis!

Check out the series Jane McClure and I have written for Dialysis Patient Citizens. This is Part II of our four-part post on "How to Set Up Your Home Dialysis Unit Without Feeling Like You're Living in an ICU!"  http://ow.ly/slBbF

It's good, practical information to help you make your home dialysis as easy and as comfortable as possible.

Take care,
Linda Gromko, MD