By The Tapestry Project SG //
Some may find that talking about end-of-life care isn’t “auspicious”, but we think it’s apt because life is about living well, leaving well and human connection.
In this piece, we chat with Joanne, an end-of-life doula, who is part of the “No One Dies Alone”, a programme in which volunteers provide support and companionship to long-stay patients who have no living next-of-kin and are nearing death, at the Institute of Mental Health (IMH).
*Note: This programme is temporarily put on hold in light of COVID-19.
Could you tell us more about what you do as a “No One Dies Alone” volunteer at IMH?
As a “No One Dies Alone” volunteer with IMH, I make time to visit selected patients, or persons with mental health issues (PMHIs) who have been diagnosed with a terminal illness or are deteriorating from old age.
Most of the long-stay patients are individuals who had spent the most part of their lives staying at IMH. Some of them do not have any families or next-of-kin.
For the briefest time before they pass on, these long-stay patients have volunteers from this programme attending to them like how a family member or friend would.
For me, I use different approaches to befriend the patients I meet.
Touch is thought to be the first sense a human develops. For the longest time, some of these patients might have forgotten what it was like to have a family or friend figure in their lives. It might mean a lot for the patients just to have a “No One Dies Alone” volunteer sit with them, and simply talk or hold their hand.
Once these patients become too ill and move into the dying stage, I sign up for bedside vigiling duties to accompany these patients as they approach death.
The sense believed to be the last to go is hearing. Hence we hope that, through the programme, patients can hear positive words and also able to feel a reassuring touch, giving the patients a proper farewell.
What started you on this journey?
While pursuing nursing studies back in 2014, I had already decided to go into end-of-life care upon its completion. I had done my occasional personal research in the areas of palliative care, end-of-life doula work, and the use of music in end-of-life care.
Coincidentally, IMH had then started this special programme for their long-stay patients who do not have any next-of-kin. I felt I could help make these patients’ lives somewhat more meaningful, and ensure they are given a respectable send-off by simply being present at their cremation and burial sessions, when usually there would be no family or friend present for them. It’s a lonely journey to go through when one is dying.
And what does it take to be a volunteer in this programme?
The formal requirements are a minimum age of 25, no recent bereavement in the last six months, at least six months of volunteer experience with IMH. The group leader, who manages a group of volunteers, will first conduct an informal interview to ascertain their interest, readiness, and commitment.
But to me, what it really takes is if one is truly interested in caring for and journeying with those who had been forgotten by society, and not be involved merely as a means to clock hours for their studies or co-curricular activities. In this case, we are referring to PMHIs who had been diagnosed with terminal illness.
Was there a particular patient who made an impact on you? How so?
There were two patients whom I would like to mention.
Madam Tan* (*pseudonym) was a lady in her 80s who would sing Christian songs and go into prayer whenever I played the harp for her. Despite having lost her ability to walk as her health declined, her Christian faith helped her remain optimistic and joyful. She often spoke words of blessings to volunteers who visited her.
Mr Goh* (*pseudonym) was a gentleman who loved 4D and Toto so much I decided to bring along actual 4D and Toto betting slips for him to look at and touch. Churning out four-digit numbers to volunteers and playing cards brought him much joy in his final days.
I visited him on Christmas last year as I thought it might be his final Christmas; furthermore, it was a day when most people would be out with family or partying with friends. He could not eat much and had appeared much weaker and confused compared to the few days before.
As I left the ward after feeding him dinner and chit-chatting about 4D and Toto, I felt quite sad to see so many other patients in the ward that did not have anyone to spend time with, as I made my way out to meet my friends for a Christmas get-together.
Mr Goh passed away a few days later, just five minutes before I reached his ward.
Could you share with us some reflections you have?
Sometimes, these festive periods are times when people may feel especially lonely. I remember when my mother brought me out right after our family Chinese New Year reunion dinner to bring along food to lonely, isolated elderly left alone at a home.
These moments also remind me of how fortunate I am. There was a time when Madam Tan said, “It’s good to have a home to go back to. I don’t have a home. I only stay here.” She had never had a loving family and home, and this sense of loss seems to have haunted her even at the end of her life.
What would you like people to know about end-of-life care for PMHIs?
There is still much to be done to fight stigma against individuals with mental health issues. Many are ostracised or looked at askance due to their diagnosis.
Adding salt to the wound is to the taboo subject of death and dying. “Who in their right mind would want to make friends with a dying mental patient? What can you do with someone who’s not able to hold a proper conversation with you?”, some might think. It truly takes very special volunteers without any basic experience in the healthcare sector to be part of this programme.
End-of-life care involving the long-stay patients at IMH has taught me that no one, not even those with mental illness, should be left behind when faced with adversity – in this case, death. Life should be celebrated: regardless of its happy or sad moments, regardless of one’s social status.
Volunteers can sign up for the No One Dies Alone programme at volunteers@imh.com.sg .
Joanne is a Melbourne-trained end-of-life doula. She is a member of the Australian Doula College (ADC) and Natural Death Advocacy Network (NDAN). Apart from volunteering at IMH, she is also a Green Burial Movement Advocate.
Outside of her newfound vocation in palliative care, she is currently pursuing a part-time nursing degree at the National University of Singapore.
Read more of our Tapestry Stories here.