A 21-year-old pregnant woman stricken by bone cancer is in constant pain but she is unable to take any painkillers because of her unborn child and in the end she gives birth to a stillborn and she herself dies, her agonizing screams a heartrending sound that’s difficult to forget.
This is just one of the many harrowing experiences of the three nurses who are the lifeblood of the Beacon Foundation Hospice, which caters to the needs of terminally ill cancer patients.
Nurse Cecilia Bennie, the supervisor at the hospice, along with nurses Marina Ramsden and Deomati Dowlatram together are a force to be reckoned with when it comes to providing care for those cancer patients who would have been told that their end is near.
It is not an easy task and with the hospice being the only one of its kind, the services of the nurses are required throughout the length and breadth of the country.
The story of the 21-year-old, who although in pain refused to allow her leg to be amputated in an attempt to save her life, ended tragically but it can be placed against the many others that give the nurses the impetus to keep going 25 years after the hospice became a reality.
While the woman’s agony was brought to the attention of the hospice, its services never reached her because of her pregnant condition and she did not remain alive long enough for them to help after she gave birth.
“Those are the ones that really hit you when you know you didn’t get to reach her…the doctors wanted to amputate her leg but she didn’t want it to be done but it didn’t go too well and there was this back and forth kind of conflict… But you know in all of this it is not the system, it is not the nurses, it is the loved ones that really lose when a patient dies,” Nurse Bennie told Stabroek News during a recent interview.
Refused
Cases such as this and that of Sandra Alli, a young mother who was ailing with cancer and who also died under tragic circumstances, after allegedly being abused by her relatives, are not easily forgotten.
Nurse Bennie told Stabroek News that while Alli’s plight was brought to the attention of the hospice, she initially refused to allow them to visit her. Bennie pointed out that if a patient does not want their help then there is nothing they could do. But they did not stop there in Alli’s case and were in fact trying to arrange with the woman’s friend Sharon Harding to visit her unknown to her relatives but it never happened and in the end Alli died in the hospital in agony with what were evident marks of violence on her body.
“That was a very sad case too and to know she died without any help…” Bennie said.
At present the nurses assist in the end-of-term treatment of some 133 patients countrywide, 53 of whom became known to them during this year.
While it is a difficult road to travel the nurses said what keeps them going is the fact that they know they are needed by their patients and helping some of them to re-connect with estranged relatives is a feat worth achieving.
Big problem
But it is not just the nurses who keep the hospice going – they are ably supported by Dr Rohan Jabour, Medical Director and Dr K ‘Bud’ Mangal, whose roles are in an advisory capacity.
A serious problem facing the hospice is the ready access to drugs for patients, unlike in the past.
Dr Jabour explained that the hospice is facing a “big problem right now with obtaining the medication that we need.” He noted that the problem is not created by Guyana.
He noted that the guidelines do not allow as in the past for persons to collect medication for the hospice and bring it into the country. The Medical Director said it is a problem he is working to fix but at present they have a “gap” and have been barely surviving with some assistance from the Centers for Disease Control (CDC).
It is a problem that the hospice has been experiencing for the past three years but Dr Jabour hopes that following a meeting with the Ministry of Health it will be rectified. He said that he would inform the ministry of the quantity of medication the hospice requires over a period and this would be put into its budget.
Unable to provide
Nurse Bennie said that the relatives of many of the patients are unable to provide the sort of assistance they need without being guided and this is where they come in. Most of the patients come to the attention of the hospice through referrals while others would make contact and yet others would learn of the hospice through relatives of other patients who would have benefitted.
Of course confirmation of the diagnosis is needed “so we know what we are up against and we need to know whether they were weak, not eating well, bowels not doing well and those kinds of information.”
They would then visit the patient and do an initial assessment of the patients, most of whom Nurse Bennie said would be in tremendous pain and would require drugs to help them.
“Through our work we try to let outpatients know that ‘you matter because of who you are and you matter until your very last day’”, Nurse Bennie said.
She said care and comfort is what they focus on and they aim to render the patient “pain free” and for them to be among their loved ones and familiar surroundings until they die.
After the patient would have died the work of the nurses are not finished as they then work with the relatives and help them through their bereavement.
“We fill that gap in the health care system to take care of the terminally ill. We go into the homes, we assess and we do what you call symptom control,” Nurse Bennie said.
“Whatever distressing symptoms the patients come up with that is what we treat but the big problem is pain, that is the most distressing symptoms in most cases and then you have other things like nausea, vomiting… constipation…, whatever the situation is you assess and you treat,” Nurse Bennie said.
Meanwhile, Nurse Ramsden pointed out that they don’t only teach persons how to administer the drugs but they also have to do counselling sessions as many of the patients are unable to come to grips with their reality and even their relatives are sometimes in a state of disbelief.
She said many doctors would also give the patients a time span during which they would die and this causes serious psychological damage to the patient and their relatives as they are sometimes found counting down the days. The hospice nurses would then have to counsel the patients and help them to move away from thinking about their estimated date of expiration and while some may die before, many live much longer.
“Another problem we have is when relatives do not want the patient to know what is wrong with them. However, what we find is that when the patients are told what is wrong they would sometimes say `you know I suspect this’ and it is easier to work with them,” Nurse Ramsden said.
“And then there are times when we are asked to go and search for lost relatives where there is a gap, you know there was a falling out and before the person dies they would request that we find a daughter or a son,” Nurse Ramsden said. She said sometimes they would travel to Linden to find a brother and whenever they are successful in locating the relative and there is reconciliation they “feel good because we have achieved something.”
She described their work as a “big job” as it involves more than “just going to see a patient and giving them medication.”
Nurse Bennie recalled the case of a mother who had lost her young son. Although he was in intensive care before he died she was not prepared for his death and had a nervous breakdown following his demise.
“Up to now every time you see her she would still recall everything that happened and she has not been her usual self since,” Nurse Bennie said.
False hope
One of the problems the nurses said they encounter was that some doctors give the patients and their relatives “false hope” and as a result it is difficult at times to get them to understand the reality of the situation.
Dr Jabour confirmed that this happens and he said it occurs not only with cancer patients but in other cases when patients are critically ill and the nurses and doctors do not want to tell them that they may die anytime soon. He said he does not understand why the nurses and doctors do this but they also do this with parents of children who would die and when the child dies the parent is shocked. He pointed out that if the parents or other relatives are told then they can spend the last moments with their relatives or child, which is very important.
One of the hardest things for relatives, according to Nurse Bennie, is to leave their loved ones in the hospital and when they return the bed is empty or the patient is covered with a white sheet. She said they hate when their patients have to go to the hospital because the “personal touch” they get at home is lost and they are unable to spend quality time with the patient.
And according to Nurse Dowlatram they provide their service to the entire country and while they may not be able to physically travel to all locations they have persons with whom they liaise in far-flung communities.
“Like in the Amerindian areas, when we can’t go we make contact by phone and when the health workers are coming out they would collect treatment for them so we assist with the follow-up care,” Nurse Dowlatram said, adding that it is all about networking.
Every day two of the nurses are out of the office and they would go to different areas daily and travel as far as Berbice, Linden and Parika. When they are unable to visit – they visit a patient about once a month or sometimes once every two months – the nurses contact the patients and their relatives on the telephone for reports and also to ascertain whether the patients are taking their medication.
And it is not just terminally ill patients who are seen by the nurses because until recently when the Periwinkle Cancer Club was formed there was no support group for persons diagnosed with cancer and they would visit Beacon seeking help and counselling and the nurses do not turn them away. Nurse Bennie said that they now work along with the recently formed cancer club.
“You would get a teenager with a lump in her breast right down to a seventy-five-year, seventy-eight-year-old full blown orange-like appearance breast or it could be anything in between,” Nurse Bennie said.
Quiet role
Dr Jabour noted that in the past Beacon has always played a very quiet role so many persons did not know of its services but he said this has been changing over time and the programmes are “getting bigger and bigger but the aid that we have been receiving remains the same.”
Explaining his and Dr Mangal’s role at the hospice, Dr Jabour said they are really there to provide backup to the nurses and to prescribe the medication needed by the patients. He pointed out that all three of the nurses are well-trained and have been involved in this sort of work for a number of years.
“If they got problems with diagnosis, if they get problems with medication that is where I come in,” Dr Jabour said, adding that they only see a patient when the nurses request that they do.
The Medical Director noted that Beacon Foundation has expanded over the years and the contribution from the charitable organizations remain the same and while in the past the foundation remained out of the spotlight he said recently they have been talking more about their services which have been expanding.
One of their main donors, the Association of Guyanese Nurses and Allied Professions, has been committed to Beacon for a number of years and would organize refresher courses for the three nurses every year and they would take turns in accessing the training.