Lisa Krieger, SJ Mercury News reporter, and Dr. Jerina Kapoor, chair of Pallium India-USA
Pallium India-USA has a mission to help community members to learn about advance healthcare planning. What better opportunity to educate and spread the word than National Healthcare Decisions Day, a national effort to make early planning a part of the national conversation?
On Apr 22, 2012, the organization, which is the USA arm of Pallium India, gave a presentation at the India Community Center in Milpitas, California. The event drew over 100 attendees, and featured experts in the healthcare field as well as journalist Lisa Krieger, who has done a great deal to make healthcare decisions a talked about topic.
Dr. Jerina Kapoor, Founder and President of Pallium India-USA spoke to the large and involved audience about the crucial work that is being done in India to bring palliative care to all those who need it there. The local goals of the organization, said Dr. Kapoor, are to spread awareness of Advance Healthcare Directives, and to work towards culturally sensitive hospice volunteerships to serve the community of Indians living in the USA.
After showing a powerful video clip, Dr. Kapoor spoke about the importance of putting down on paper a well thought out Advance Healthcare Directive (AHCD). This helps avoid burdening one’s family with having to make decisions in crisis.
“The greatest gift you can give to your children is an Advance Healthcare Directive,” she said. “The time to take care of this is now when we are well and thinking clearly.”
Lisa Krieger from the San Jose Mercury News spoke to the audience about her personal experience of her father’s recent suffering and death. She stressed that when a family member is seriously ill, things happen so fast and stress is so great that one has lost the opportunity to have an AHCD. Krieger wrote an article about this which led to a series, “The Cost of Dying.” (See our post on the Mercury News coverage.)
Other speakers at the event included Dr. Raji Ayyar, an oncologist. Dr. Ayyar spoke about how one can do AHCD planning along with living and exercising well. In addition, Dr. Sulochana Lulla introduced the audience to hospice and palliative care, while Zarina Kaji, a registered nurse spoke about the Pallium India-USA hospice program.
Many Pallium India-USA members have received high quality training in this field and are available to provide culturally sensitive care as part of local hospice teams.
As a final high note for the event, the organization took part in the annual Sevathon torch lighting ceremony. As part of this ceremony the India Community Center passed the torch to Pallium India-USA. The Sevathon event itself will take place July 15 at Baylands Park, Sunnyvale, California, USA.
Pallium India-USA plans to join thousands of Americans across the country for National Healthcare Decisions Day on April 16 2012, which brings to the forefront the need to make one’s future healthcare decisions known to family, friends and healthcare providers.
The group will give a formal presentation about how to develop an Advance Healthcare Directive on April 22 at the India Community Center in Milpitas, CA – Learn more and register here.
Advance Healthcare Directives are instructions for your medical decisions if you are not able to speak for yourself. The program is meant to inspire, educate, and empower the community to take charge of its medical care at a crucial time in one’s life.
The San Jose Mercury News coverage of the issue is well worth a read, part of a larger series on the “Cost of Dying,” from reporter Lisa M. Krieger. This piece gets to the heart of why an Advance Healthcare Directive is such an important document:
Cost of Dying: planning for a good death, from advance directive to talking with your family
(Dai Sugano/Staff)
Bill Newman has seen his share of hospitals. That’s why he plans to never go back.‘If I fall over, just let me go. No 911 guys with paddles. No bells and whistles,’ said the 87-year-old retired high school teacher and double bypass survivor.
[…] Modern medicine prolongs our lives in ways once thought unimaginable. But increasingly, we dwindle into frailty, disease and dementia, ill-prepared for the day when treatment fails us. We can do better, if we make a conscious choice.”
Pallium India-USA’s mission includes educating the community about the crucial need to put one’s wishes on paper so as to ensure the best quality end of life care.
A few simple words–or even just a silent, supportive presence – can do so much to bring peace to the seriously ill and dying.
This was the essential message of the “Compassion in Action” Conference, held at Santa Clara University in Santa Clara, California, USA on March 30, 2012. The theme of the one-day event was “Providing ‘The Best Care Possible’ Through the End of Life.”
Organized by Hospice of the Valley and Santa Clara University Department of Counseling Psychology, it featured top tier speakers and drew a sold out crowd of professionals and volunteers from the palliative care and hospice fields.
Pallium India-USA, which was a sponsor of the event, provided information to participants about culturally sensitive hospice volunteering, advance care planning, and the situation in India.
Kersi Daruwalla, a longtime hospice volunteer who has recently joined Pallium India-USA, was a stalwart at the table, as were volunteers Zarina Kaji and Sunshine Mugrabi. Kersi had this to say:
This is a type of conference I recommend all of us can attend from time to time. It revitalizes every cell in your body, and helps you understand how simple life and relationships can be. Yet, it is up to us to make this happen.
I can sum this experience up in the following words: It feels good to be a human, caring for another human.
Here are some highlights from the speaker line-up:
Providing “The Best Care Possible” Through the End of Life – Ira Byock, MD, Director of Palliative Medicine, Dartmouth-Hitchcock Medical Center; Professor, Dartmouth Medical School. A world-renowned writer and speaker on palliative care issues, Dr. Byock gave a gripping and impassioned speech about the crucial need for a major rethink on how we take care of our elderly and dying in America. Giving examples from his own practice and personal life, he laid out a path for medicine, families, and US society as a whole to ensure the best care possible for those who are in the last stages of life.
Family Meanings and the Death of a Loved One: Understanding and Helping – Janice Nadeau, RN, PhD, Minnesota Human Development Consultants. Family dynamics are an inherent part of the grieving process. Dr. Nadeau, a family therapist, used an unusual prop–a literal “family mobile”–to demonstrate the importance of understanding and recognize these unconscious interactions when working with families of dying patients.
The Challenge of Caring: Putting Your Empathy to Work Without Burning Out – Dale G. Larson, PhD, Professor of Counseling Psychology, Coordinator, Health Psychology Emphasis. Dr. Larson shared his immense wealth of experience in how to stay balanced in the end-of-life care field. Laced with humor and warmth, the talk inspired many in the audience to nod in recognition over and over again. His list of the “top 10 signs of burnout” were as laugh-out-loud funny as anything on late night TV.
Wounded Warriors: Their Last Battle – Deborah Grassman, NP, Bay Pines Veterans Administration Medical Center. Grassman’s hard hitting and emotionally intense talk brought tears to the eyes of many in the audience. She demonstrated with story after story that the healing of our veterans at the end of life is and can be a healing for the entire nation.- Read the 2007 article from Home Healthcare Nurse, Wounded Warriors: Their Last Battle (pdf)
Where is Santa Clara ?
What are your wishes for the end of your life?
This is not always an easy topic to raise. Fear, unease, and denial are common responses. Even for those who have already been diagnosed with a serious or life limiting disease, committing the plans to paper is often emotionally challenging.
Pallium India-USA has made it its mission to educate the Indian community living in the USA about how to embark on this kind of advance care planning. They take a culturally sensitive approach that is working well as they reach out to the community.
Pictured from left to right: Saroj Pathak, Jayashree Desale, Mira Nagrani, Zarina Kaji, Madhu Khanna, Dr Raji Ayyar, Dr Jerina Kapoor
On March 21, 2012, Pallium India-USA gave a presentation to the Seniors at the India Community Center in Cupertino, California. The talk was greatly appreciated by the many seniors in the community who turned out for the presentation.
The event started with an introduction by Dr Jerina Kapoor, chair of the organization, about Pallium India-USA’s mission and the significance of Advance Health Care Directives in our lives.
A packed house at the India Community Center
Ms Zarina Kaji speaking about the Hospice Volunteer Program
Dr Raji Ayyar, an oncologist, then gave a powerful presentation on the details of Advance Health Care Directives, enriched with examples from her own professional and personal life.
Pallium India-USA volunteer Ms Zarina Kaji then took time to explain to the audience about the organization’s Hospice Volunteer Program.
To cap it off, participants took home copies of a user-friendly California Advance Health Care Directive form.
Dr Raji Ayyar presenting to the audience about advance healthcare directives
In all, time well spent for both the presenters and audience members.
Go Wish: A thought-provoking activity for all involved.
Many of us think we know how we want to live our lives. But how many have sat down and discussed how we’d like our lives to end?
The Go Wish card game is a powerful tool that we have recently discovered and used. It is a thought-provoking and helpful way to bring out one’s core personal values for end of life care that we wish to receive. Here is the description of the game from the web site:
Go Wish gives you an easy, even entertaining way to talk about what is most important to you. The cards help you find words to talk about what is important if you were to be living a life that may be shortened by serious illness.
Playing the game with your relatives or best friends can help you learn how you can best comfort your loved ones when they need you most.
- Each deck has 36 cards. Thirty-five of the cards describe things that people often say are important when they are very sick or dying.
- The cards describe how people want to be treated, who they want near them, and what matters to them.
- One card is a ‘wild card.’ You can use this card to stand for something you want that isn’t on any of the other cards.
This past November, Pallium India-USA met to try out using this important tool. We wanted to find out about our own end of life plans and questions, as well as to discover the best ways to serve the community as hospice volunteers and advisers on end of life planning.
Ms Cindy Safe of the Coda Alliance
Ms Cindy Safe, Executive Director of the Coda Alliance, a community-based, not-for-profit organization that helps individuals and their families plan and prepare for the concluding passages of life led the activity. It took place at member Saroj Pathak’s house in Los Altos Hills, CA.
Very interesting discussions followed. For the participants, who are involved in the field as Pallium India-USA volunteers, and for many of us, also as healthcare professionals, it was an eye-opening experience. We were surprised to learn, for example, how a phrase like “maintain my dignity” held different meanings for different people.
