This, 2018 is the centenary of Dame Cicely Saunders, founder of the modern hospice movement. Keeping it in mind in this year the theme of World Hospice Palliative Care Day was chosen from this Legend’s above famous, iconic and motivational quote-“Because I Matter” which indicates that every patient is important and deserves the best care until death, Because They matter…
To make this special day more special and successful we from ‘Hospice Bangladesh’, Aastha Hospice and World Child Cancer (WCC) jointly organized a “THE BEFORE I DIE” Board Event at Bangladesh Medical College campus and another event “Dying to know Day”-What to know Before you go”
“You matter because you are you
And you matter to the end
Of your life. We will do all
We can, not only to help
You die peacefully, but also
To live until you die”————Dame Cicely Saunders (Nurse, physician, writer and founder of hospice movement)
“THE BEFORE I DIE” Board is a global participatory art project where people can write their important wishes through chalk and share with others. We started this event last year on the eve of World Hospice Palliative Care Day, 2017 at Dhaka Medical College Campus. At the very beginning we received huge positive response from the participants and till now we organized this event at four different institution. At Bangladesh Medical College campus we found tremendous response from medical students, Doctors, teachers and all other participants. Honorable Director, Principal and Head of different departments of Medical college and hospital also attended and wrote their wishes on Board. Dr. Sazia Afrin, department of Skin and VD, Bangladesh Medical college and Hospital worked with us and supported us from beginning to end. This event started
from 9.00am to 1.00pm. We provided T-shirt, chocolate and coffee for the participants. Students enjoyed the event a lot. Some wrote serious wishes and other wrote funny things. It made us happy and content as an organizer seeing people enjoying the event till the end. We hope and believe that this program influenced people to talk and think about death which will indirectly encourage them to be with those people living with life limiting illness.
Our another event was “Dying To Know Day”- What To Know Before You Go… which was held at EMK center, Dhanmondi (Edward M Kennedy Center) from 5.00pm to 7.00pm. It was completely a new event that have ever been organized in Bangladesh. The purpose of arranging such different event is to raise awareness regarding Advance Care Plan (ACP). This type of events help people to develop their death literacy that is required to make for their end of life plan like a will and other things that are important at end of life.
Though ACP is especially important for people who are older or have chronic illness or advanced diseases but it is not necessary to be ill to start advance care planning. Healthy people are also encouraged to think about their health and care preferences and discuss with their family member. We hope that this event helped the audience to make such planning for themselves and also they can inform their community people through talking about end of life.
Before the event, we have lots of confusion about how the audience would show their reaction to this different program. We had dilemma whether it would be successful or not. But in reality we got very positive response from the audience. People from different profession and different age came and joined at the event. Some participants were from family members who lost their near and dear ones, some have chronic patients in their families. Even patient suffering from different chronic illness attended and shared valuable opinion to the audiences. In this short-time event there were different segments such as speakers time(palliative care specialists), sharing, death-chatter box games and death cafe. Speakers of the event were:
- Dr. Shahinur Kabir, Founder and Managing director, Hospice Bangladesh.
- Lt Col. Kazi Shahid Ahmed(Retd.), Chairman, Gemcon Group.
- Prof. Dr. Nezamuddin Ahmed, Chairman, Dept. of Palliative Medicine, BSMMU.
- Dr. Zohora Jameela Khan, Associate prof. (Pediatric hematology and oncology), Dhaka Medical College and Hospital.
- Laila Karim, Sr. Advisor, AYAT Education.
Ameenah Ahmed, Director of Gemcon Group, Nazia Jabeen, Founder at Sporsho Braille Prokashona and other iconic person of Bangladesh were also present at EMK centre.
Dr. Shahinur Kabir, Managing Director of Hospice Bangladesh gave “Welcome Note” beginning of the program.
After the welcome note, Prof. Nezamuddin Ahmed, Head of centre for Palliative Care (CPC), BSMMU discussed very nicely about what is ‘Palliative and Hospice Care all about, what is its purpose, how we can benefit from this special care. “When people are asked about death, they usually feel uncomfortable and some try to avoid the topic. If some agree to answer the question where they would like to die, they say they would like to die at home and when they are asked how you would like to die- most of them reply with a sudden death or death after short suffering.
People do not want to suffer long before death, but it happens in most cases. Dr. Nezamuddin sir gave his lucrative speech about the importance of Palliative and hospice care to ease the suffering of any human being before death.
In Palliative care it is very much appreciated and emphasized to discuss about death, to make advance care planning as it will help to take death as a natural process and facilitate to face any critical moments.
Following Dr. Nezamuddin Sir, then Kazi Shahid Ahmed, Chairman of Gemcon Group delivered speech. He shared his experience about palliative care to the audience. He said that palliative care should be taken early. “Everyone should accept and plan for death as death is obvious and what I did, I had made plans long before.”
He said that he used to work with pre planning in every step of his life whether it was about career or personal life. Like other planning he also made advance care planning regarding end of life. He set up every matter that may happen after his death. This planning he discussed and involved her family member.
“I have already told my sons and wife that I would donate my eyes and asked them to donate my body to the Dhaka Medical College for medical students”, he said.
“Palliative care is helpful for every aged person like me. It is really special care. I have been under palliative since last three year and I am very much satisfied with the care provided by Hospice Bangladesh,” He added.
Audience enjoyed his incentive speech from beginning to end.
After that Zohora Jameela Khan, Associate Professor, Department of Pediatric Hematology and Oncology, Dhaka Medical College Hospital said we should determine what do we like and dislike , even what type of treatment we can take or avoid and inform our near ones when we are physically fit. She provided informative presentation on “Dying To Know Day”. She specially emphasized on Death Literacy which is a critical issue at End of life. “Like Kazi Shahid Ahmed, If anyone do not make a written will about the donation of his/her body or other wishes they want after death, It may create critical condition or huge chaos among his/her family member after death”, She said.
“Every human being has the right to choose the care she/he wants at their end stage and it should be written, otherwise it will create complication in decision making at End moment”, she also explained about the importance of death literacy from which we majority are ignoring.
Laila Karim, Sr. Advisor, AYAT Education also delivered speech on the event.
Overall the speaker session was enjoyable, informative and beneficial as everyone could learn new and important things regarding palliative care, death issues as well advance care planning. From their speech audience had been benefited a lot. In sharing segment audience participated and shared their experience about death of their closed one and also asked questions regarding advance care plan to the palliative care specialists. Some audience became emotional while talking about the critical time and important decision at end of life moment of their family members they lost.
Important statement we found in this event are “When to Stop” and “Whether we should stop or continue”… majority remain in this dilemma at the crisis moment to take major decision at end of life of their family members or and themselves. Though it is a sensitive issue
Advance care planning help people to remove this dilemma and improves the ongoing and end of life care along with personal and family satisfaction. It helps to reduce anxiety, depression and stress regarding death and death related issues.
Palliative care is also a part of plan as in old age a person suffers with old age complications. He or she needs physical, psychosocial and spiritual care round the clock.
Dr. Sazia Afrin, Chairman of Hospice Bangladesh expressed the gratitude to the guest for their active participation in such new and exceptional event at the closing of the event.
The whole program was divided into different amazing segment such as
- Speaker’s Session
- Sharing
- Death Chatter Game and
- Death Café
Participants enjoyed every segment specially Death Chatter Game.
At the end of the program we felt that this program should be longer than two hour to discuss more things. We hope in near future we will organize this events at different place to make people aware about advance care plan.
Talking about death as well as preparing for death is one kind of taboo in our society. People usually do not like to talk in death issues. Even patients suffering from life-limiting as well as their family member have unknown fear, hesitation to talk about death as well as they have no advance care planning. Dying to Know” event has positive reception in the Palliative Care sector especially in advance care plan issue. We hope that this event will benefit the audience with knowledge to make advance care planning through talking about end of life.