Pallium India demonstrates the power of volunteers

    K.N. Nair

Imagine if respected members of the community could help teams of doctors and nurses do effective home visits to care for immobile or terminally ill patients. Volunteers at Pallium India have done exactly that in the state of Kerala in the south of India. Pallium India provides inpatient and outpatient palliative care for seriously ill patients and is currently hosting our group from the University of Iowa.

Pallium India faced the challenge of how to get health workers to remote areas and to maintain contact with patients and their families. Their innovative solution was to train community members as a primary point of contact for the patients and their families. Over 2000 people in the state of Kerala have volunteered to act in this liaison role between their community and Pallium. They underwent a 2 day training—8 hours of classroom work and 8 hours of practical training during home visits.

Volunteers at Pallium are respected and crucial members of the team before, during and after the home visit. First, they make sure that the vehicle carrying the team does not lose precious time trying to find the right house.   Getting lost can be demoralizing for a team, but more importantly, it robs time from the patients and families.

Bhaskanan Pillai (on the right, with a patient)

Pallium volunteers come to the home visit, update the team on the interval since the last home visit, keep the paperwork straight, stay current on the new plan and how soon the volunteer needs to assess the patient for a response to any change in therapy. The opinions of the volunteer are voiced and trusted.   Sometimes the volunteer better understands the level of caregiver fatigue, or knows the family or the history better than the rest of the team.

                                                                   New volunteer with me and the Pallium nurses

Volunteers serve Pallium because of their own personal stories or due to the full spectrum of care that Pallium provides without regard for the ability to pay. Some volunteers work every day (and have their cell phone on at night). The volunteers build support for Pallium in their communities. In turn, Pallium has trained them well and there is no question about their role on the team.

Well done Pallium India! Creative use of team work and resources to optimize care and to ensure good follow up for patients!

Thanks again to Professor J0 Eland for her photos and to Team Iowa for their humanism and perceptive engagement during home visits and in class.

Pallium India

University of Iowa is sending its 1000^th student to India during Winter Term 2015 in a program that has been the brainchild of emeritus geography professor Dr Rangaswamy Rajagopal for over 5 years.

Among other programs in art, engineering, physical diagnosis and special education, Dr. Rajagopal asked the internationally renown Dr. M.R. Rajagopal (no relation) to host students in the palliative care program he leads, Pallium India. You can (and should) read Dr.Hannah Fox’s blog about the challenges of providing access to pain control in a country where morphine has not been historically available.

With their average census of 600, Pallium India teams provide outpatient clinics, home visits and inpatient care. Today I just came back from a home visit day in the countryside in which the Pallium team (doctor, nurses and volunteer) saw 9 immobile patients in their homes because they could not come to clinic. Pallium services were free to them because they meet the financial criteria for government food subsidies.

They had a variety of medical illnesses: stroke, advanced colon cancer, trauma, polio sequelae, dementia, prostate cancer.   They were all cared for by their families. The nurses asked me how we did home visits and took care of the elderly in our country. They were startled to hear that the elderly frequently are cared for outside the home.

The day started early and we drove to the rural community and stopped at the home of a community Pallium volunteer who stayed with the Pallium and Iowa teams throughout the day to make sure that we found the homes easily and could provide follow up afterwards. We hiked to some homes and drove directly to others. The Iowa team felt an enormous privilege to be with this highly respected clinical team. We gathered what we could in the clinical interactions, all conducted in Malayalam, the language of Kerala.

The Pallium team stopped for lunch at a roadside restaurant. The Iowa team had decided to have snacks while the Pallium team ate their rice with curries and condiments—all super chili hot and served on a large banana leaf.

We also learned what we could about the local economy. Rubber trees were everywhere we went. The families appeared

to be collecting sap in coconut shells.     The sap is manipulated in some way to produce what looks like dirty dish towels hanging on the line, but has the feel of vinyl. The dog mistakenly thinks it is the focus of this photo.

Our Iowa team was moved today by being invited into homes to bear witness to the accomplishments of Pallium India and the courage of families caring for their loved ones with ingenuity (see the pulleys for one of our patients) and love.

My thanks to Jo Eland, my fellow faculty member for her superb photos.

http://www.hrw.org/news/2014/09/16/rights-activists-honored

DELAYED GRIEF

It was an odd start to a dream vacation in Rocky Mountain National Park.  Tears streaming down my face on the drive from home to the Cedar Rapids Airport.  My husband and I were going to meet two Australian friends-Conrad and his 22 year old daughter, Claire, who was my daughter Claire’s close friend while we lived in Melbourne for 6 months.

But Doune was going to be missing.  Claire’s mother and my soul mate died in a car accident on her way back to Melbourne two years earlier.  Doune was a tall woman with a fast gait—she and I walked with her dog Gypsy along the Yarra River in Melbourne at a speed that left me (short legged) breathless.

When we lived in Melbourne, Doune invited me for a Sunday lunch one weekend, I realized that real people cook marvelously  and with a eye for taste and presentation…and have outside parties that I thought were fictions of food magazines.  She enjoyed my attempts to get through a cookbook of an Australian chef, Bill Granger whose restaurant I loved in Sidney.  She and Conrad were kindred souls when we planned a birthday party for our daughters- the Claires (amazingly with birthdays a day apart) which was a lollies and chocolate scavenger hunt in a city that prides itself on its chocolate shops.  The girls went everywhere in the city.

The relationship continued across the Pacific.  We hosted their son Boyd for 4 months in our home.  We continued to send packages, and Doune was regular about sending any of the new Bill Granger cookbooks.

And then a call came 2 years ago that Doune had died and that the Wonder Dog Gypsy had survived the accident.

Up until that trip to meet Conrad and Claire, Doune’s death was nothing real.  Sure, I went on a commemorative hike  in Iowa when they had “Doune’s walk” around Princes Park in Melbourne.  But until I walked and hiked with Claire who had Doune’s fast pace, tall stature, and ability to talk while walking fast—the reality of my loss  (and how small it felt compared to theirs) had not set in.   I deferred my grief as there was no reason to subject myself to that pain.   How generous of Claire and Conrad to comfort and listen while tears flowed before, during and after our hikes ….. two years after her death.

The irony of it all is that Doune sent me a book years earlier, written by colleagues or teachers called Nonfinite Loss and Grief, by Elizabeth Bruce and Cynthia Schultz.  The book is about grief when the object of your grief is still present-a family member with dementia,  or in other life situations when life chronically fails to meet expectations.  The grief never ends as it reinforced by constant comparison to “what could have been” and the constant contact with the object of grief.  This kind of grief can be disenfranchised grief—not socially allowed because the object of the grief still lives on.
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It occurs to me that we might defer grief for reasons other than long distances and many time zones.  Sometimes we take it in small chunks because it is all we can handle.   Or we think that strength is not crying or appearing resilient (a trait I see  in professionals).  Deferred professional grief can lead to burn out, and in health care, we tend not to model grief for our younger colleagues. Helpful articles about professional grief can be found here and here.

I know Doune would care about our grief.  She was such an engaged Mum that she would care most about the grief work of her now adult children.  She is no longer physically present to help-she is here though,  in the presence of memory—which are stirred when I open the Bill Granger cookbooks, see the pictures of her family and when I sensed her while on the top of Estes Cone in Rocky Mountain National Park.

100 Great Nurses

A couple of weekends ago, while on call for the Palliative Care consultation service, I turned a corner in time to see the sobbing adult son of a dying patient leave his Dad’s hospital room.  The next image stopped me in my tracks: On this busy medicine inpatient unit, a nurse named Becky opened her arms and hugged the man.  It looked natural and genuine, and well, … human.

Becky is one of 100 Great UIHC nurses who signed up to take the End of Life Nursing Education Consortium (ELNEC) course online on their own time.   This national nursing education initiative to improve palliative care began in 2000 and over 16,000 nurses have completed the course.  The course has been divided into eight modules: Nursing Care at the End of Life; Pain Management; Symptom Management; Ethical/Legal Issues; Cultural Considerations in End-of-Life Care; Communication; Loss, Grief, Bereavement; and Preparation for and Care at the Time of Death. In recognition of the needs of different populations, there are now ELNEC courses for pediatrics, critical care, public hospitals, veterans and geriatrics.

The Great 100 UIHC nurses are taking the course on line through the Hospice Education Network (HEN). The faculty for the course are the national “who’s who” in hospice and palliative nursing.  Palliative Care at the University of Iowa underwrote this educational initiative, with a volume discount from HEN.  We targeted inpatient nurses, nominated by their nurse managers, and provided it free of charge.  At the 4 month mark, 79% have initiated the course and 14% have completed it.

For me it has been great fun to talk to the nurses about what they have learned from the course.

Becky Wendt, 6RC (Medicine) told me that the biggest takeaway from the ELNEC course was the value of communication skills in our complex hospital environment. ( I am sure she would have hugged that grieving man even before the ELNEC course, but the course reinforced the value we place on her own humanistic core.)

Oncology nurse, Lindsay Gaskell said: Once I started the program, I just couldn’t stop! I guess you could say I was somewhat addicted 🙂 I found the topic of medication administration for the dying patient to be the most informative as it is so specialized for this patient population.  For example, sublingual morphine is absorbed in the stomach, not under the tongue.

SNICU nurse, April Doggett:  All of the information has been overwhelming and incredible.  The piece that I feel that I have learned the most on is the Ethical Presentation; we have such a small percentage that use Advance Directives appropriately or even have them. I am really looking forward to the last module- The Finals Hours of Life.  I find it an honor to be a part of family decisions in times of critical need.

Kaytee Knoop, SNICU: I will continue to remember is the use of opioids in patients with renal failure.  I think that we all think any pain medicine will be sufficient in keeping the patient comfortable during compassionate extubation, but there still are the side effects of metabolite accumulations and it may cause more discomfort to the patient. (Glad to have you, Kaytee in my ongoing quest to avoid morphine in renal failure!)

Annie Inglehart, 3JPW (ENT/GYN ONC): This past week I helped a colleague work with a patient that came to UIHC from an outside hospital just to sit in the ER and then come to our floor and die here after 2 hours, the patient was 93 and DNR.  It seems that the time spent running from one hospital to another could have been valuable family time to process her passing (I know we learned that using the word “dying” would be more clear cut and truthful – Hard to break an old habit).

Angie Kipp, SNICU: I appreciated the topic of multidimensional pain- take all things into consideration when treating someone’s pain including financial, emotional and spiritual concerns. What does this pain mean to the patient? It may be seen to them as a source of “punishment” from things done in their past or may be seen as a disease process returning or worsening in their body- these patients need more than pain medication.

Emily Van Essen, 3JPW(GYN/ENT ONC): One thing that stands out to me that I learned about was the concept of “last dose syndrome.” Being a new grad nurse, I had not experienced this yet, so I wouldn’t have even thought of it as a concept to discuss with a family in end of life. After hearing about the concept I can see how easy it would be for people to be afraid to cause harm, even though their intentions are good. The end of life process is something that the family will remember, so we need to ensure that those caretakers don’t feel like they are killing their loved-one by giving what they believe was the “last dose”.  (Our palliative care team was very proud to hear that Emily was chosen by her charge nurse to care for a patient who was dying because she had completed the ELNEC course-great recognition Emily).

These nurses have completed the entire ELNEC course:

Lindsay Gaskell, Cancer Center Infusion Suite

Leslie Bonnet, SNICU

Kristina Gates, ED

Tammy Krotz, 6RC

Deanne Sinn, 6RC

Emily Van Essen, 3JPW

Becky Wendt, 6RC

Amber Clark-ED

April Doggett-SNICU

Kaytee Knoop-SNICU

Jean Burr-3JPW

Maria Broghammer-4JPE

Susan May-4JPW

Ann Iglehart-3JPW

Next time you see them, congratulate them and ask them for a palliative care education tidbit: the whole idea of ELNEC is to “pass it on”.  We owe it to ourselves to build a community of learning, and … humanity.

Men’s love for their mothers

I have been struck this week by the loving attentiveness of men toward their mothers.  My mother has always downplayed Mother’s Day as a Hallmark invention.  (My own children feel that this is the day that I should prove greatness by making them breakfast.)

This year has been a tough one for my Mom-a complicated knee surgery and worsening macular degeneration.  She continues to live alone in her dream home that she and Dad built in the 1970’s.  My brother looked ahead and decided that a 10 day trip from Arizona to New Hampshire would include Mother’s  Day.   During our 3 way phone calls together, it is clear that her frustration level is low, the humor is high, and while he is deferential in important matters, he pokes fun when he can. He is walking shoulder to shoulder with her– day in, day out,– during a tough time.  What love.