Kuala Lumpur - 19 July 2008
Dr Evelyn Ho relates what she learnt from the above workshop and how it applies in everyday living, improved communication with others, including patients and how to handle despair and to ignite hope which is sometimes deeply but surely within the depths of everyone.
Do take note that the views given are as perceived and interpreted by Dr Evelyn Ho.
Maintaining hope in the face of despair? It seemed paradoxical, yet within a few minutes of the start of the workshop, what seemed impossible in chronic diseases, illness and cancers was indeed HOPE! Yet, hope was not unrealistic clinging to an impossible wish or desire.
The concepts of hope, maintaining hope when goals of care changes, facilitating hope in advanced cancer, exploring the healthcare professionals perceptions on hope, communicating hope and false hope as well as the psychological and spiritual framework on hope was explored.
Liese Groot-Alberts, a Grief Therapist from Cairnhill Medical Centre, Auckland and Dr Susan Marsden, Palliative Care Specialist and Community Consultant, Mercy Auspice, Auckland, New Zealand both conducted the above workshop at Hospis Malaysia, Kuala Lumpur on 19 July 2008. Some 34 healthcare professionals from volunteers, nurses, pharmacist to doctors of various disciplines attended this full day workshop. This was the 2nd workshop in a series for the week - the first being a 2-day workshop on Grief and Suffering. These Palliative Care Workshops were designed to address Attitude, Skills and Knowledge issues in palliative care.
There is great misconception about hospice care, and even the word "hospice" tends to have everyone thinking that hospice is a "taboo word" because they are not dying in the next few days or their loved one or friend is not on the deathbed yet. Although hospice care may have started with looking after the needs of a person who was close to dying, it has now evolved and not a tad too soon - because today, medical advances has resulted in many diseases becoming chronic. Even a person with cancer that has spread to other parts of the body may be able to control the disease and live many more fruitful and rightfully "comfortable" years.ope (& Despair)
As Liese and Susan opened our minds to the concept of HOPE, we learnt it was intertwined with despair, which was simply suffering without meaning. These strong emotions existed because of the other. Despair cannot exist without hope and hope arises from despair. These topics have been the subject of research and many have written on it. Do not take my word for it, just "google" it on the internet and see for yourself.
We learnt that there were many "definitions" of hope, but the key ingredients was that it was from within, words may not be able to describe it adequately, and that we sometimes needed to "listen" to be able to "hear" hope within the patients, those in our care or even within ourselves. Hope provided a bridge from past experiences with the possibility of going into the future and taking the next step - making it an achievable goal. It was multidimensional and dynamic (Dufault & Martocchio, 1985), and hope should not be based on false reality - therefore giving false hope was taboo and would be more harmful in the long run.
This made everyone reflect on how many times, as healthcare professionals, we may have wanted to give 'hope' but by making statements which could not be substantiated or for which we really could not tell. A common error in communication would be, "there, there, everything will be all right" when a patient broke down from receiving bad news after a medical check up or investigation! We were taught to allow a person the right to grief, as long as he/she was not harming him/herself or others. There was a difference between cure and healing.
In chronic diseases (such as kidney failure), including cancers when advanced, despite the despair of not being cured of the disease, one could still heal - and everyone was entitled and also should be nurtured towards that "healing", rather than being given false hopes of cure such as with treatments that may only have a very small chance of response. Hope should be based on reality, was impressed upon everyone at the workshop.Communicating Hope
No matter how deep the despair, everyone had within themselves a glimmer of hope - and as palliative care givers, we could help to ignite that hope or even help someone realise by listening to them and asking certain "open-ended" questions to help that person work through and realise, that despite all the negativity, there was some hope. After all, who in this world would never die...it was just either sooner or later!
Some questions one could ask in the discovery of hope would be:
1. How do you see your future?
2. What do you understand about what is going on? (In reference to the disease or situation)
3. Who are the people who or things that bring meaning to your life?
The lack of time was not the issue in establishing communication channels. Every healthcare professional has given this reason as an excuse or believes in this reason (as they all have too many patients to get through in the clinic or wards) as to why they cannot counsel patients or even attend a communications or counselling workshop to help make themselves better communicators and improve establishing rapport with their patients. There was simply NO TIME....they believed. Yet, we learnt otherwise from Liese and Sue.
Even short time intervals could be adequate but only if we approach it properly - for example - not talking down to the patient, barking orders but a case of making a connection, however brief but if made, could itself be healing. The person would feel cared for and that itself was hopeful for the patient. Someone cared for them!
Interpersonal connectedness (Herth 1995) was a hope-fostering strategy that anyone could use, especially nurses in their day to day interaction with patients.
Even healthcare professionals needed to listen to themselves and recognise the signals that they were beginning to be stressed or was facing burnout. In order to build resilience, and continue to be effective in caring for their aptients, one had to try to heal themselves or get help from others. Healthcare professionals should not have wait to be carried out on a stretcher before realising they had neglected their health and was over-working or had become substance-dependent to overcome the stressors in their job or life.sisted suffering
What did this mean? Did physicians (doctors) not take their Hippocrates' Oath and pledged to do no harm to their patients? Well, that ideal also went out the door - because unintentionally, today, physicians may indeed cause "suffering" in the broad sense of the word. This arises sometimes through futile treatments or excessive or unnecessary investigations!
What were the excuses - "Oh, I don't want to take away their hope" or "but the relatives insist on more treatment" There are underlying issues for these "coping" mechanisms from physicians - and it may reflect the physician's discomfort in telling the truth about BAD NEWS! Although, there may no longer be cure, there was still much that could be done to help make the person feel better or deal with their disease better. There was no need to subject the patient to more intensive and debilitating chemotherapy for their cancer when the chance of response was minimal! There were other ways to bring "healing" and hope.
A story was related to us, taken from Kitchen Table Wisdom: Stories that Heal by Rachel Naomi Remen, a physician herself. In this particular story, used as an illustration, the patient could only relate and talk to his oncologist but no one else. He looked forward to that once a week consultation but to enable that connection with his oncologist, he had to continue to take his once a week injection (which was not making him any better). To the patient, this oncologist was everything in the world to him, and that visit alone every week was "healing" in every sense, not the injection he was receiving. He tried to tell his oncologist, he didn't think the treatment was working but the moment he said so, the oncologist then told him, there was nothing else for treatment and there was no point seeing him. There is more to the story, and it is simply impossible to relate in the same way Rachel Remen has. Do try to get a hold of that book and read it.
ecpe for HOPE or instilling HOPE
Hope needs:
1. The presence of meaningful relationships - not necessarily human relationships, even pets (aloneness vs loneliness was discussed)
2. The ability to feel light-hearted (humour must be appropriate when used)
3. Have clear aims (one should try to help the person look into him/herself for specific goals, for example going for a holiday with the family)
4. Courage, Determination and Serenity. (When at peace, one could think more clearly, and one needed courage and determination to take the next step)
5. The ability to recall positive moments (even if someone had nothing come to mind on past positive moments, the opportunity to voice this out to an empathic listener was sometimes itself a healing process)
6. Having one's individuality accepted and respected. (We were not to be judgemental)
7. Spirituality (not necessarily a religion)
8. Healthcare professionals need to look after themselves!
Liese and Susan put everyone through a self searching exercise on what they felt, knew or thought were signs or symptoms of deteriorating physical, emotional, intellectual or spiritual health.
Even healthcare professionals needed to listen to themselves and recognise the signals that they were beginning to be stressed or was facing burnout. In order to build resilience, and continue to be effective in caring for their aptients, one had to try to heal themselves or get help from others. Healthcare professionals should not have wait to be carried out on a stretcher before realising they had neglected their health and was over-working or had become substance-dependent to overcome the stressors in their job or life.
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