By Simona Sikimic

Tuesday, January 11, 2011

BEIRUT: Modern medicine, with its manipulation of faulty genes and ingenious new ways of fighting off disease, has created an overriding belief that even the most uncompromising of ailments can be cured, or at the very least held at bay for decades.

But, while science has extended life spans and revolutionalized treatments, it has also complicated the inevitable process of dying.

It has left an increasing number of terminal patients, not to mention their families, grappling with questions of when exactly to give up the fight and when to finally to say no to additional surgeries, chemotherapy or new experimental treatments that promise a small shot at recovery at the expense of quality of life.

The sad truth is that for all the sophistication required to keep a terminally ill patient alive, the slow end to life can oftentimes be highly undignified, with tubes and machines replacing the patient’s bodily organs and family members buckling under the double burden of watching their loved ones suffer and footing the rising hospital bills for unnecessary treatments.

In the West, people have long been offered an alternative, with many countries providing home hospice care as a basic health service, but for all its health and psychological benefits, this option has until now remained a strict preserve of the privileged and wealthy Lebanese who could pay for private care.

A year ago, however, one of the country’s only at-home hospice care non-governmental organization finally began bucking the trend when it started offering a largely free-of-charge alternative to the few existing hospice centers which had been struggling to provide out-of-hospital assistance to the terminally ill.

SANAD’s (Support) mission is to humanize the last days and months of life by managing pain at home and maximizing the quality, rather than simply the duration, of life. It works on a holistic approach and also provides assistance to the whole family, helping loved ones acclimatize to the morbid reality.

“We offer a support structure for a terminally ill individual to be able to have a painless and dignified end,” said Lubna Izziddin a social development consultant and founding SANAD member. “This can be peaceful and we help it to happen in the comfort of a person’s home, where they can die at peace, surrounded by family and friends.”
The home hospice care provided by SANAD’s team of volunteer nurses and doctors is very case-specific, with an additional team comprised of a clinical psychiatrist, pharmacist and psychologist, on hand 24 hours a day to help families cope with the medical, emotional, and more practical needs experienced during this difficult time.

“We first get to know the patients and their families and sit with them so that that they begin to trust us which is extremely important under the circumstances,” said Nurse Marie-Claire Mouhawej, a specialist in Palliative Care and a SANAD volunteer. “We [also] talk to the doctor to agree on a course of care and we keep in close contact so if the circumstances change our treatments can adapt as can the frequency of our visits.”

The home hospice staff is fully licensed to administer advanced pain medication, such as morphine, and they also undergo training to customize themselves with home health equipment.

The organization insists it is strictly not offering to euthanatize its patients, and that it keeps a rigid control of what drugs are administers in accordance with Lebanese law.

“We provide hope to the patients,” said Helen Nuwayhid a director of nursing and SANAD executive board member. “Not false hope that they will beat their disease, but hope that they will be able to enjoy the best quality of life afforded to you.”

SANAD nurses and doctors work as a team in the close confines of the patient’s home, as well as the intimate setting of the gradually growing offices, where the lines between the two are markedly blurred.
“This is partly responsible for giving us the energy and the determination to do what we do, even in the most difficult of circumstances,” said Izziddin.
The other part of the drive, however, is largely personal.

“When you receive a letter from a family or a donation from a person who has passed away, it doesn’t just energize you it makes you fly,” she said.

“I first got the idea in Jordan where my mother was receiving home hospice care provided by Al-Malath organization, and as hard as it was, the experience was comforting because we knew we had done everything that we could to give my mother the dignified end that she deserved.

“When she went, she went with a smile on her face. How many people out there can say that?”
Indeed, the home hospice care by professionals has been proved to help grieving families move on, with one U.S. study concluding that those who had undergone this kind of service were three times less likely to suffer from depression six months after the death.

“[The SANAD nurse] was the light in our darkest hour,” said Lina Kazan, who recently lost her father. “She was an angel of comfort when we were desperate … [When I was] still not accepting the future and denying losing him from this sickness my battle continued with the help of this angel.
“It was her tender care that helped ease the pain.”

Still in its infancy, the limit of what SANAD is able to do is small. With the organization operating on a strict not-for-profit basis – offering its services for free and managing to provide equipment and medication if the family is unable to meet these requirements – it has thus far put the needs of its small group of patients ahead of any expansion plans.

These are on hold until the organization can get more experience and launch its fundraising campaign in the coming months but big things are planned for the future.

SANAD has begun collaborating with some of the country’s leading health stakeholders who focus on palliative care, including the Cancer Society and academic centers.

Together they intend to conduct studies and evaluate the true potential of home holistic hospice service in Lebanon and to remove health system barriers which may be inhibiting access to the provision.
“There has been a big gap in Lebanon when it comes to end of life care,” said Izziddin. “But it is a basic right to enjoy a dignified end devoid of suffering. We are determined to offer more people have the choice.”