When I got online to buy my ticket for Maz Jobrani's latest show in Beirut about a month ago, little did I know I was making my first step towards meeting inspiring new friends.
SANAD brings Maz Jobrani back to Beirut - Banner in Hamra Street
Photo: R. Abouzeid
I remember a time when it was possible, if we tried and searched really hard, to find a magic pathway hidden where the rainbow touches the earth. It feels like yesterday and an eternity ago.
"Real" life, responsibilities, practicality and the disillusioned wisdom that comes with understanding rainbows are only optical phenomena ridden from any magic whatsoever is partly how we get to adulthood. And the older we get, the more likely we are to be forced to face notions and realities that we did not comprehend or even acknowledge for what they truly are and mean when we were younger. Death must be the most painful lesson of all. It sneaks in from behind and startles us in malicious ways. None of these ways are ever easy, and no time, knowledge and even faith can prepare us to the magnitude and actual suffering that comes with burying a loved one.
Caring for sick relatives or friends has got to be the most difficult of responsibilities. The guilt that comes with their passing is all the more overwhelming as nothing we do ever seems enough or right.
For my father, last year meant saying goodbye to his mother and again, only forty days later to his father. But before that painful involuntary closure, our family had been struggling with duty, guilt, judgemental relatives and neighbors, and even people we do not know, all having an opinion about what we should do and how we should do it. All of them ready to preach, none of them available to help. In the meantime, my father had two of the people he loves the most, condemned to living in their beds and unable to understand what is happening around them. Aside from suffering from advanced Alzheimer, their health was gradually worsening until medical assistance and institutionalized hospice care became a necessity.
So I admit the very first thought that came to mind when I stumbled upon SANAD on Facebook was "Oh my God, I so wish I had heard about this organization before". Which is why I feel it is my duty to introduce them to you and everyone else, as unfortunately, no one is exempt from disease or death.
The Arabic word SANAD (سند) literally translates to "Support". It is also the name of that wonderful non-governmental organization based in Hamra, at the heart of the Lebanese capital where the NGO recently invited Maz Jobrani in an effort to raise funds and awareness for their cause.
Virgin Ticketing Box Office was as easy as 1, 2, 3
The show was outstanding and Maz was hilarious, as always. It was also a pleasure watching local talents Joseph Azoury and Elias Ghoussoub's opening acts which were exceptional. I laughed so hard that night, my head hurt! And I was lucky enough to even have a little one-on-one with Maz when he tackled the topic of new babies as I happened to have left my own newborn with my mother that evening, just so I could attend the show. Do not judge. Let us be real, I was not about to miss Maz Jobrani... in Hamra! Now, that would have been ridiculous!
Following the show, I made the promise to pay SANAD a visit so I could learn more about what they do and how we can support them, support us all.
I have read somewhere once, that when a loved one is struck by a disease, the entire family gets sick. Not literally of course. But emotionally. Everyone's lives must unavoidably change. The disease takes up most of the space at home, and those forced to live with it cannot escape being affected.
Some of these diseases can drag for months, years even. So how do we make sure that loved one does not ever feel like a burden? And how do we make sure we never feel guilty for thinking they indeed, are a burden?
Because diseases exhaust everyone. And when people get sick, everyone gets tired, and sad, and angry and sometimes cruel. Unintentionally of course. But the consequence remains the same: more pain. When that loved one leaves us, the hurt does not. It lingers, gets comfortable and invites guilt in our hearts and lives.
I have seen it far too often in the past few years with close relatives departing and others enduring and surviving their losses. At the times when I personally was touched, when my husband was touched, I truly wished someone had offered us some guidance.
Unfortunately, our loved ones were never proposed any psychological support and we were not presented with any grief counseling. Patients must live their last days plagued with the idea of death. And their relatives must live the rest of their lives tormented with guilt, pain and sorrow.
Everyone makes due, eventually, whichever way they can or know how. But it should not have to be that draining. It should not have to be that cruel. Sometimes, it only takes a gesture, a very small one, to make things a little better. How? With help from professionals who have the expertise and knowledge to alleviate the pain and confusion.
Palliative and Hospice Care have been highly controversial fields worldwide because of the myth that claims they equal quitting the quest for a cure, surrendering to death and passively waiting for the end. After all, End Of Life care comes to play when physicians declare no more treatments are available to a particular case.
If I were to sum up in one word everything I heard from the amazing people at SANAD, that word would be "compassion".
Compassionate medical care. That almost sounds like an oxymoron. Indeed, how can professionals who must be objective by distancing themselves and ridding their minds (and hearts) from any paralyzing emotional attachment be compassionate at the same time?
It is no coincidence, the modern version of the Hippocratic Oath that physicians vow to respect includes to "apply, for the benefit of the sick, all measures [that] are required, avoiding those twin traps of overtreatment and therapeutic nihilism." Clearly, this statement implies being reasonable enough to avoid therapeutic stubbornness or overtreatment.
At this stage, the aim is no longer to treat or cure but rather to improve Quality of Life by managing and relieving the patients from pain and its symptoms in order for them to enjoy their remaining days comfortably and with dignity.
In order to do so, Hospice Care also includes providing assistance for patients’ families to help them understand and cope with their new situation. Medical and social workers assess the psychological dynamics within the family in order to provide the right resources for everyone.
I had the opportunity to get an insight on compassionate healthcare when Lubna Izziddin, founding member and hands-on social worker with SANAD invited me to meet her and two of her colleagues: Helen Samaha Nuwayhid, a Registered Nurse with Master's degrees in Public Health and Nursing and recently elected President of the Lebanese Nurses Order, as well as Marie Claire Mouhawej also a Registered Nurse who specializes in Palliative Care. They shed light on SANAD's efforts as well as End Of Life care in Lebanon.
SANAD: A CALLING AND A MISSION
SANAD caters for those patients that are "referred to go home" as Lubna Izziddin explains. "The patient gets home because there is no treatment and this is where our role comes in. What we do is Home Hospice Care."
Although representing the same Quality of Life principle, Hospice Care differs from Palliative Care as the latter "begins at the diagnosis stage and extends until the end" clarifies Marie Claire Mouhawej. "Hospice is at the end, when there is no more treatment. So there was a long way completed [by the patient and his physicians] before we come to play."
"Once declared, we agree with the doctor of the patient on the care plan so the patient is also comfortable that we are coordinating with their original doctor" continues Lubna Izziddin. "So our doctor and nurse and their doctor work closely together" depending on the original physician's wish for involvement. "Some have strong involvement, some fairly, some not at all. It really differs from one patient to another".
The "no-treatment" diagnosis is essential before SANAD steps in. "A number of patients came to us and we thought that they needed to be treated so we did not take them in" insists Lubna Izziddin.
"For us, it's about quality of life. It's about dignity. It's about living those days and enjoying those days as much as possible. So the most important issue is for the pain and symptoms to be managed. And also, the most important task is to help the family and the patient's surrounding, for them to be able to cope with the situation in order to have an active role with the patient and to actually support them in a way that makes the whole family unit or the patient's environment active. Active and living those days and moments rather than just passively waiting for the D-Day to come."
|Lubna Izziddin at SANAD's fundraiser show|
Photo courtesy of SANAD
"We just held a focus group discussion with the patients' families and we got fantastic feedback from them on how much it helped them live those days" reveals Lubna Izziddin with a genuine smile and the sort of pride only a noble effort can engender. "I always like to quote an article that says hospice care facilitates or helps the families and the patients say 'I love you', 'Thank you' and 'Goodbye'. And those are in different ways manifested in the work we do, I believe".
"SANAD has been actively working for two years now" explains Helen Nuwayhid who describes this focus group discussion as being an evaluation of this work: "We called for an independent facilitator to listen to some of our families, the families we have worked with for an average of six months. This is how long a family stays with us approximately."
Many themes were tackled such as "tension between cure and care which is the issue of futility of treatment and how patients get stuck in the middle. Another theme was the difficulties caregivers in the family go through. All this just goes to show the importance of hospice."
"They spoke of SANAD's work and how it changed their lives. How it added quality to their lives. How the presence of a competent nurse and doctor from SANAD managed to relieve their pain by making a thorough assessment of the patient's pain, the symptoms, how to take care of them, what narcotics should be taken. SANAD medical professionals treated the pain with the best results by being there, available at any point in time so that if there was no good response they could come up with another plan. Bottom line, by relieving the patients from pain symptoms and they could actually live their lives."
|Helen Samaha Nuwayhid|
Photo courtesy of SANAD
Helen Nuwayhid insists SANAD does not "prolongate or diminish lifetime" however, their approach with the patient is based on the belief that "even when there is no treatment, there is hope. Hope for connectiveness, hope to be able to make decisions, the ability [for the patients] to live with their families, the ability to interact and share with them. So yes, we do say there is hope. It's not 'false hope', it is hope that they can live life until the last moment, free of pain and there is no lying".
"And we stand against the concept that if there is no cure it means that's it, it's the end, just wait for death. We have to live by our principles and this is what we stand for. It's a compassionate, comprehensive, competence that actually embraces the family".
QUALITY OF LIFE
"The first hospice in the Arab world started in Jordan 20 years ago" reveals Lubna Izziddin who is well acquainted with Al-Malath Foundation for Humanistic Care, who took care of her mother back home. "They're fantastic and they so kindly supported SANAD and our team technically when we started SANAD, we also went to Jordan for a three-day crash course training and discussion. They even came to us and we co-hosted a conference with the nurses syndicate here [in Lebanon] and they are always available to help when we need them. We coordinate well together not only because we know they're experts in the field and are a reference on the subject but also because they are from the Arab world. We travelled to other countries for training but Lebanon is similar to Jordan in culture, religions, practices. So this gives us an insight on their experience in Jordan as part of the Arab world. Because there are lots of taboos and we need to use our customs and traditions in a way that supports hospice, not hinders it. We can't parachute concepts that are not part of our culture. We do believe in change like every other person who advocates and lobbies for new ideas and concepts but we have to do it within the culture".
Marie Claire Mouhawej explains: "When we enter a home, we find people who are lost. They don't know where to start. Our role is to start with them. We think with them to see how to make their lives easier. The fact that they know there is someone they can rely on helps the family. When you relieve the family, you relieve the patient because they are the patient's support and caregivers. Instead of wasting time, confused, they can spend this precious time with the patient more comfortably".
SANAD provides this critical support through a team of medical experts of course and Marie Claire Mouhawej supported by Dr. Salam Jalloul, a geriatric physician, visits patients herself and provides nursing care for those who cannot afford a nurse but still need the assistance. The team also offers social and psychological support for all patients and their loved ones, training the family to be better equipped to take care of their patient and guiding them through the different phases until the end. And as not every need is medical, SANAD caters to all sorts of necessities, some more unusual than others. Once they hired a housekeeping service to clean the home of one of their patients because she could not afford to do so herself and had no one around to help. "That's quality of life, isn't it?" asks Lubna Izziddin with a smile.
"EOL CARE" AS NATIONAL PUBLIC HEALTH ISSUE
Helen Nuwayhid goes on to reveal an important aspect of SANAD's lobbying on the political front for new polices to be put in place in order to build a system for Palliative and Hospice Care. "There were talks of Palliative Care at a national level already. And in May 2011 there was an important initiative backed by the The Ministry of Health's general director. A decree was issued at the national level stating we will attend to Palliative Care as a public health issue. A national committee was convened with four sub-committees at the different levels of Palliative Care, namely Practice, Education, Research and Policy". Helen Nuwayhid herself, as SANAD representative, is member of the national committee and is the focal person on the sub-committe on Policy. "This is a great achievement. In comparison with the rest of the Arab world, we are giving importance to Quality of Life at EOL (End of Life)".
"The sub-comittee on policy does take a special interest in "pain": how can we make the pain procedures and mechanisms easy for doctors to follow, for practitioners on the ground, and for the families to know how to deal with the pain for the cycle to be complete. This is an issue that we're tackling in the policy sub-committee".
"What we're calling for is for the whole spectrum to be integral to the healthcare system. In our policy making we're promoting for policies to take into account the voice of the community. We need awareness raising at the level of physicians, nurses and all the practitioners as well as the curricula in these professionals' schools to be updated in that respect. We also need awareness at the level of the community, to reduce the taboo of death and dying".
SANAD Q and A
How do families know about you?
Lubna Izziddin: Word of mouth mostly, and doctors refer them to us sometimes; Google also. Some of the patients have relatives abroad where they are more aware of hospice so they Google "Hospice Care Lebanon" and find us.
What sort of medical care can be provided at home?
Lubna Izziddin: Pain and symptoms management are the priority at the beggenning, and also as importantly, social and psychological support to the patients and their families. We provide medications and medical equipement that ensure better quality of life. It is not about a good medical care as much as it is a wholestic approach, we work on the the patients' needs, the families' and the setup as one unit. Our support varies from one patient to another, type of ilness, family dynamics, the medical set-up, social issues and many more different dimentions. We are privilaged that the families "let us in" at all levels, this is priceless.
Is Hospice Care at home covered by the insurance and/or social security?
Lubna Izziddin: We're still at the very beginning, we are in the process of discovery. Insurances, public and private are one of the issues we want to look at, from the policy and practice perspective. There are other organizations that also started providing palliative and hospice care such as Balsam Palliative Care in Lebanon, so as you can see, Lebanon is really taking very good steps in palliative and hospice care in both implmentation and policy levels.
Marie Claire Mouhawej: In Lebanon we don't have a structure for Hospice Care as no one provides financial support; nobody helps at home. So we try to fill the gap and we are discovering some things that can be covered such as medications. In Lebanon, there are no official rates set by the government for doctors and nurses which is why these services are not covered. It is widely known worldwide that it is cheaper for the patient to be at home, but in Lebanon, because hospitals are fully covered by the government, the decision to take the patient home is more difficult to reach. Patients prefer to be at home because at the hospital they are not in their surroundings, they get lost, they are simply unhappy.
Where do you operate?
Lubna Izziddin: We cover Beirut el Koubra. At a very later stage, we may expand. We don't want to expand too quickly. We see SANAD as a small NGO that is growing slowly but surely. The issue is very sensitive, it is mostly considered a taboo in our community, and mistakes are not allowed. We're talking about End Of Life. So we can't hurry things. We're happy with how much we're learning and the feedback from the focus group which confirmed that our interventions responded to the different needs of the patients and their familes, and this is actually what is most important. A patient who lived with dignity and a family that remembers fondly their loved one and the role they played in that phase in the most beautiful way. This means that we did our job right. This is our calling. But we don't want to jeopardize quality just for the sake of expansion.
|Mohannad Khatib, who donated his photos to raise funds for SANAD, with Dr. Salam Jalloiul, SANAD's doctor and Marie Claire Mouhawej, SANAD's Nurse|
Photo courtesy of SANAD
How do you recruit?
Lubna Izziddin: Finding the right people to do this is the most difficult task. We don't only need a nurse and a doctor who are qualified and who are skilled medically. We also need - and it is equally important - somebody who's wise, who knows how to handle difficult situations, challenges, family issues, decision making, and who are compassionate.
Do you welcome volunteers?
Lubna Izziddin: We are starting to build a volunteer structure. We have people volunteering in an unstructured manner, here and there who help with very specific tasks varying from moving beds from home to home for instance or helping with the fundraising activities throughout the year. But we plan to launch a platform for volunteers very soon and we aim at training them in the very near future. We urge your readers who are interested in volunteering to kindly send us an email to email@example.com.
How can people support you?
Lubna Izziddin: We totally depend on donations. People can donate online, or by bank transfer which is the preferred and easier method, or even by cheque addressed to "SANAD". We also organize fundraisers. The Maz event for instance was a great success and will enable us to hire a new nurse. We also have Bracelets people can purchase for as little as 10,000 Lebanese Pounds available at SANAD. People can email us or call +9613451774. More information on our merchandise and events will be updated regularly on our website and Facebook page.
Photo courtesy of SANAD
Useful Information and Bookmarks
SANAD, Home Hospice Association of Lebanon
Ola Building, 3rd Floor
Hamra main street
T: +961 3 451 774
Support SANAD / Bank Transfer Info
Account Name: SANAD
SWIFT Code: BLOMLBBX
Bank Address: BLOM Bank, Bliss Street Branch
Account number 033 01 300 0887005 1 7
IBAN LB67 0014 0000 3301 3000 8870 0517
Account number 033 02 300 0887005 1 6
IBAN LB05 0014 0000 3302 3000 8870 0516
Al-Malath Foundation for Humanistic Care, Jordan
P.O. Box 851536
Amman - 11185
Hashemite Kingdom of Jordan
T: +962 6 5685767
F: +962 6 5685767
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