'Angels' ensure no one dies alone
Volunteers spend time with dying patients who have no family, friends
By Judith Tan

Providing Mr Wee, 71, with a little comfort are dietitian Serene Tay (left), palliative doctor Angeline Seah and nurse Sim Lai Kiow (right). Alexandra Hospital's No One Dies Alone programme includes volunteers to help look out for patients who receive no visitors. -- ST PHOTO: LIM SIN THAI

WHEN doctors can do no more, palliative nurse Sim Lai Kiow takes over, providing comfort to patients close to death who have no family or friends of their own.
'Everyone celebrates a birth. When a baby is born, he is not alone. So even in the worst circumstances, no one should die alone,' said Ms Sim, 51.

How it started
THE first 'No one dies alone' (Noda) programme was started by Ms Sandra Clarke, a nurse at the Sacred Heart Medical Center in Oregon in the United States.She started the programme after an incident in which she was unable to find time to be with a dying patient.
From time to time, some terminally ill patients admitted to Alexandra Hospital are identified as having outlived their spouses, having no kin, estranged from their families or whose families are overseas.
So together with fellow nurses and other volunteers, Ms Sim acts as a surrogate loved one, spending time with dying patients.
They are part of the hospital's No One Dies Alone (Noda) programme.
Launched here in 2004, Noda was inspired by an Oregon programme started by an American nurse three years before. (See other story.)
Ms Sim herself was spurred to volunteer after taking care of her dying mother, she said.
'The emotional care of patients was lacking,' she recalled. 'They needed to air their grievances, their fears and pain. We are there to lend an ear and a shoulder.'
Now she changes out of her nurse uniform before she goes to sit with a patient, sometimes just holding a hand, and speaking in soft voice to the patient.
Noda can now call on palliative care doctors, a social worker, dietitian, music therapist, telephone operator and two non-hospital volunteers to care for patients. They are paired with terminally ill patients, and they do this on their own time.
Ms Sim said Noda sees about 20 terminally ill patients each year. Volunteers are given a kit containing a CD player, religious texts and inspirational poems.
They may choose to read to patients, play music or even help them fulfil their last wishes. But they do not touch on religion or pray unless the patient asks them to.
Music therapy has been added in a big way as it speaks in a way that little else can.
Armed with a guitar and melodies ranging from gospel to folk songs, music therapist Melanie Kwan brings precious comfort to patients.
'The music often takes them away from their pain. Sometimes it helps them remember happier times. Some patients hum along,' she said.
Volunteers are trained through courses and workshops, said Dr James Low, head of the Geriatric Medicine department at Alexandra. Held once every three months, workshops can also be attended by members of the public. They are also given skills to cope with the emotional exhaustion of caring for the dying.
Volunteers also meet weekly to share their experiences because being an angel of mercy is not easy, they say.
Ms Sim said: 'The hardest is when you come back the next day to find that a patient you were with had died during the night - alone.'
This is the hardest blow for a volunteer, she said.
'Volunteers also need time to grieve. Some of us may attend the funeral to say goodbye, and give ourselves closure.'
Helping the dying patient fulfil his or her last wishes can also give closure, said Dr Low.
'One patient wanted to write a poem to her husband to thank him for the years they had spent together,' he recounted. 'Melanie put music to it and taped volunteers singing her words. The video was shown to her husband after she died. It not only gave him comfort, it gave comfort to the volunteers as well.'
Ms Sim said that being a volunteer with Noda had changed her. 'Holding the hand of someone who is making the last journey on his own makes a difference for him. But it also changes you. It has made a big difference for me too,' she said.

juditht@sph.com.sg
The Singapore Hospice Council is organising the inaugural Singapore Palliative Care Conference on end-of-life care here. The biennial scientific meeting, which is organised for all health-care workers who are involved or interested in end-of-life care, will be held next Friday and Saturday. Themed 'Respecting Choices', the conference will address the different issues and challenges facing health-care workers, patients and their families in dying with dignity.
The speakers include Professor Harvey Max Chochinov from Canada and Professor Cecilia Chan from Hong Kong. The conference, to be held at RELC International Hotel, will be opened by the Minister of State (Prime Minister's Office) Heng Chee How.

Prof Randy Pausch- The Final Lecture of a Lifetime

http://www.youtube.com/watch?v=ji5_MqicxSo

This is a lecture for those who may think that they are alone in facing this dark period. An inspirational last lecture from a young Professor at the prime of his life. This lecture was featured in the Oprah Winfrey Show.

Seasons of Love

Seasons of Love
(Theme Song Lyrics for Voices for Hospices)

525,600 minutes
525,000 moments so dear
525,600 minutes - how do you measure, measure a year?

In daylights
In sunsets
In midnights
In cups of coffee
In inches
In miles
In laughter
In strife
In 525,600 minutes

How do you measure a year in the life?
How about love?
How about love?
Measure in love
Seasons of love.

525,600 minutes!
525,000 journeys to plan
525,600 minutes

How can you measure the life of a woman or man?
In truths that she learned
Or in times that he cried.
In bridges he burned, or the way that she died.
It’s time now to sing out, though the story never ends
Let's celebrate remember a year in the life of friends.

Remember the love!
Remember the love!
Remember the love!

Measure in love.
Seasons of love!
Seasons of love.

http://www.youtube.com/watch?v=hj7LRuusFqo

What is Palliative Care?

Palliative care is a specialty in medicine that cares for people with advanced diseases such as advanced cancer and end-stage chronic illnesses such as heart failure and kidney failure. It basically deals with life-threatening illnesses which have gone beyond cure.

The World Health Organisation defines Palliative Care as follows:

Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.

In other words, Palliative Care:

• provides relief from pain and other distressing symptoms;
• affirms life and regards dying as a normal process;
• intends neither to hasten or postpone death;
• integrates the psychological and spiritual aspects of patient care;
• offers a support system to help patients live as actively as possible until death;
• offers a support system to help the family cope during the patients illness and in their own bereavement;
• uses a team approach to address the needs of patients and their families, including bereavement counselling, if indicated;
• will enhance quality of life, and may also positively influence the course of illness;
• is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy, and includes those investigations needed to better understand and manage distressing clinical complications.

Palliative care seeks to provide humane and compassionate care to patients and their families who are going through a difficult period in this journey of life. To give you a deeper appreciation of what palliative is all about, here are some profound verses which speak a thousand words:

“You matter because you are you, and you matter until the last moment 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

"Which rational being could be at ease, or still less laugh, when he knows of old age, disease and death? Which sentient being could remain unmoved on seeing an aged, ill or dead person? This is perhaps like a tree which remains unaffected even as its neighbor falls bereft of flowers and fruit or is cut down mercilessly." Buddhacharita 4.59-61

"Those who have the strength and the love to sit with a dying patient in the silence that go beyond words will know that this moment is neither frightening nor painful, but a peaceful cessation of the functioning of the body”

“ Watching a peaceful death of a human being reminds us of a falling star, one of the millions of light in a vast sky that flares up for a brief moment only to disappear into the endless night forever”


"Slowly I learn about the importance of powerlessness. The secret is not to be afraid of it- not to run away. The dying know that we are not God. All they ask is we do not abandon them."

The founder of the Hospice movement was Dame Cicely Saunders whose life history is nicely summarised here: http://www.bmj.com/cgi/content/full/331/7509/DC1

This is what a hospice volunteer had to say about spending time with the dying: http://www.healthandage.com/html/min/gentle_endings/web/volunteer.htm

Losing Somebody Close- How It Affects You

‘One journey’s end….another’s beginning’

Introduction

We know how much this person means to you. Unfortunately losing people who are dear to us is part of the human experience. Our lives are meaningful only because we have built close and nurturing relationships with others. In doing so, we always stand the risk of being hurt when we lose these special people. This parting of ways, which is inevitable, can be the most painful experience that anyone can face. Every individual will experience this at some point in his or her life. Despite this, the experience of grief and bereavement is unique to each individual and each will have his or her own unique ways of coping .
We have prepared this pamphlet for those who are hurting and grieving from the loss of somebody close.

You’re not alone
Right at this moment, as you read this, there are many others experiencing the loss of a loved one from various causes. Still many others have trodden down this path before you. Just like you, they will be asking or have asked many questions. Why did this have to happen? Why did it have to be him/her? Why has it got to be now? What will I ever do without him/her? Questions for which there may be no answers at all. There will be a whole range of emotions too that will well up in your innermost being, each playing separately, occasionally together. Shock, sadness, loneliness, frustration, guilt, anger, fear, denial, anxiety, hopelessness, aimlessness, despair are but some of the feelings that you may have felt earlier, be feeling now or will feel at some point later.
Remember, you are not alone in this journey. Many others are taking a similar path and there are some others who would like to accompany you along the way, who wish to support you when the burden seems unbearable.

Grief is natural
In the initial stages, you may find it hard to believe that this person has left for good. You may be shocked or even ‘numbed’. There may be periods when there is a strong yearning for this person and the need to cry out becomes intense. Rapid welling of tears and uncontrollable crying will usually follow. This may be interspersed with periods of anxiety and tension. You may lose your appetite, have difficulty sleeping and experience various physical symptoms such as abdominal cramps, tiredness, lethargy, headaches, chest pain, dizziness, etc. There may also be panic attacks and you may feel breathless or feel the need to catch your breath to the extent that you overbreathe (hyperventilate).
As time goes on and you begin to sense the impact of your loved one’s death, there will be a profound sense of loss where you feel that you have lost something that is irretrievable. You may be overwhelmed with feelings of loss of control, helplessness and powerlessness. There will be feelings of longing, yearning, pining and even searching for your loved one. Some people may sense the presence of their loved ones as they go about their daily activities. Others may even have visions or dreams of their loved ones. Periods of despair, loneliness and withdrawal from social involvement may follow. There may even be loss of weight.
With the passage of time, as the storm clouds clear and as a new day dawns, the sun starts throwing its rays of hope and mother nature begins its healing process, the journey to recovery will take place, slowly but surely. Your appetite returns followed by your energy. Hope begins to shine through and you will begin to reorganise and rebuild your life which has now changed. You will never ever forget the loss but you will be able to accommodate it into your new life. You will not forget your loved one as a new relationship that transcends space and time now emerges. The sense of yearning may give way to the pleasure of remembering or recalling the good times that you had with the person in the past.

“Grief has a quality of healing in it that is very deep because we are forced to a depth of emotion that is usually below the threshold of our awareness.” Stephen Levine

Your Grief is Personal and Unique
Although you may have been told or have read that there are clear-cut stages/phases in the grief process, yours is as unique as your own person. Your pain and grief is unique to yourself and nobody can tell you to “get over it!” or “get on with your life” because it is not so simple. There is no fixed time frame for the resolution of your grief and the intensity of grief that you experience is not a measure of your affection or love for this person. You will grieve in your own unique way and in your own time, not according to somebody else’s dictate.

Be Kind to Yourself
By now, it is clear that grief affects your whole person. Your experience is physical (breathlessness, chest tightness, stomach upsets, headaches, dizziness, poor appetite, weight loss, insomnia, tired, etc.), psychological (absent-mindedness, poor concentration, short attention span, confusion, etc.) and emotional (sadness, loneliness, anger, etc).
Whatever they may be, be kind to yourself. Accept that they are a natural reaction to your grief. In fact this is essential for the healing process to take place. They should not be suppressed. Cry if you have to. This acts as a good release for the pain and hurt that you are bearing deep inside. You cannot just ‘snap’ out of this and you should avoid trying to behave as normal as possible as if nothing had happened. It will be very difficult to take on new tasks and would be extremely difficult to bounce back quickly and return to your old way of life. Pay attention to your body’s need for nutrition, exercise and rest during this trying period. Try not to expect too much of yourself.

There Are People Who Care About You
You may feel lonely in your grief or you might prefer to be left alone and withdraw yourself from the world. This is understandable. Periods of solitude and personal reflection are important but do take time too, to use an important resource available to you, that of close friends, colleagues and relatives. Most of them would be willing to lend an ear or be a shoulder for you to cry on. Many of them have had similar experiences and would be willing to share with you their valuable experiences.
This is also a time to renew old friendships and build new ones. If you belong to any organisation or group, it would be helpful if you do not withdraw completely as it is important to widen your social support network. If you belong to a religion, tap on the resources of your religion. If you really feel that you need someone to talk to and there is nobody available, there are several hotlines that you can call (listed at the end of this pamphlet).


Build a Hopeful Future and the Memory of Your Loved One is Yours Forever
Time heals a wound. Your sadness and grief will melt away as you reenter a new world without the physical presence of your loved one. But the memory of him or her will live on forever. Your world has changed irreversibly but you would, in time, be able to accommodate the absence of your loved one. You must look to the future with hope. You must get about rebuilding a new life and reinvesting in new relationships with others. Your loved one would have wanted this for you. There should not be any sense of guilt or fear of abandoning the memory of your loved one.

You can create a memorial in honour of him/her. It is not necessary to build something or even preserve your loved one’s belongings or clothings in their original state at the time of death. You could, however, collect a scrapbook of old photographs, letters, drawings, etc. or momentoes to remind you of your loved one. Some people would commemorate the anniversary of their loved one’s death by publishing in the local newspapers. In the initial years, the anniversaries may bring back painful memories but these too should resolve with time. The happy memories together, places visited together, things done together will remain. In this sense, your loved one lives on in your memories forever. And his/her legacy lives on forever in many others who have fond memories of him/her.