Palliative care is all about an attempt to relive suffering of the living and dying people with incurable, life limiting diseases, said Dr. Nezamuddin Ahmad, Professor of Centre for Palliative Care (CPC), Bangabandhu Sheikh Mujib Medical University (BSMMU), in an exclusive interview with The Guardian.
In this context, a high profile educationist-turned-physician of international repute. Nezamuddin Ahmad also said that the central point is, even if the disease is not curable, the huge sufferings can be relieved with adequate knowledge and proper skills and appropriate attitude and CPC also recognizes that sufferings of these patients are not only physical, like pain and breathlessness or a fungating malodorous wound, but also psychosocial as well as spiritual.
He mentioned that Palliative care, that’s why, is the concept of ‘Total Care’, integrating care of all aspects of human sufferings in this stage of life. He added that CPC attempts to relief total sufferings by offering a support system to help patients live as actively as possible until death. and also attempts to help the family to cope during the patient’s illness and in their bereavement when the patient rests in eternal peace.
In reply to a question, he mentioned that the initiative of palliative care in BSMMU began as a service in 2007 and the Centre for Palliative Care (CPC) was established in 2011, it has taken over the pioneering role which not only includes development of a model replicable service, but also has been pursuing awareness creation amongst health professionals as well as community at large. He further mentioned that BSMMU has also been trying to convince the policy makers to incorporate palliative care program in the main stream health care program.
In reply to another question, Professor Ahmed said that they have been organizing seminars, workshops as well utilizing print and electronic media as well to inform people that palliative care is a basic human right! In this context, he said that the interview with The Guardian can also be considered as a part of this program.
Professor Ahmed said when adding days to the life of an incurably ill person is not possible, we all should try to add life to the remaining days of the person. He realized that the present-day world has gained tremendous knowledge and skill in this subject; it is not so expensive but needs developing a proper attitude towards the issue and work together. He believes that community based approach to this agenda can really change the end of life of these patients and the affected families. So, he called upon all to give this issue its due importance and only then the end of life can be safe and pain free.
In an exclusive interview, Professor Ahmed replied to several questions, covering entire activities, services, facilities, limitations, achievements and future plans of CPC, including the different aspects of healthcare that need to be addressed soon. His deliberations are not simply interesting, rather wonderful, informative and educative as well. The valuable excerpts of his interview are presented here for The Guardian readers at home and abroad:
The Guardian: Please give us an idea when the concept of palliative care system was first introduced in the world.
Professor Nezamuddin: Modern Palliative Care or Hospice Care began developing rapidly since the late 1960s as a medical issue as well as a social movement in developed part of the world. Central to this movement was the articulation by Dr. Cicely Saunders in UK of the unique needs of incurably ill cancer patients who were approaching the end of their life under her care.
Dr.Saunders attentively listened to her patients sufferings, recorded and analyzed the statements and tried to relieve their sufferings scientifically as well as compassionately. The pioneering work of Cecily Saunders was instrumental in drawing attention to the end-of-life care needs of patients with advanced cancers worldwide.
On the basis of these experiences and evidences, palliative care gradually grew into a medical specialty, first in UK in 1987.
The Guardian: When did it start in Bangladesh?
Professor Nezamuddin: Well, one might wonder whether it has started really or not! I am saying it considering a very small service provision in comparison to the huge need here. Palliative care has been non-existent in the health care services of Bangladesh till very recent past. Then a few isolated patchy initiatives were being taken to organize a service. The major breakthrough took place when Bangbandhu Sheikh Mujib Medical University, the only medical university of the country decided to incorporate palliative care program in October 2007.
The Guardian: Would you also tell us when Bangbandhu Sheikh Mujib Medical University established the Centre for Palliative Care?
Professor Nezamuddin: Yes, as I just mentioned, the rudimentary service began in 2007 and it soon witnessed the huge demand of such service as well as a big gap that existed in the community, both amongst the professionals as well as in the common people at large regarding the understanding of Palliative care. To play a pioneer role to propagate the concept of Palliative Care in Bangladesh, the University established the Centre for Palliative Care in 2011.
The Guardian: In this context, would you elaborate what is palliative care?
Professor Nezamuddin: Yes, this is probably the most important issue! Palliative care is all about an attempt to relive suffering of the living and dying people with incurable, life limiting diseases. The central point is, even if the disease is not curable, the huge sufferings can be relieved with adequate knowledge and proper skills and appropriate attitude. Palliative care also recognizes that sufferings of these patients are not only physical, like pain and breathlessness or a fungating malodorous wound, but also psychosocial as well as spiritual!
Palliative care, that’s why, is the concept of ‘Total Care’, integrating care of all aspects of human sufferings in this stage of life. In simple language, the care attempts to relief total sufferings by offering a support system to help patients live as actively as possible until death. Palliative Care also attempts to help the family to cope during the patient’s illness and in their bereavement when the patient rests in eternal peace.
The Guardian: And say, for whom and why palliative care is necessary?
Professor Nezamuddin: Broadly, this special medical care is directed to patients with incurable, life limiting illnesses, mostly the non-communicable chronic diseases. The most common consumers are possibly the cancer patients, but in Africa, HIV AIDs patients are more in number though. But, it should also be mentioned that the philosophy of care also includes other similar patients like those paralyzed and bed bound with major stroke or spinal cord injury, motor neuron diseases or refractory heart failure or even patients with end stage failure of major organs who cannot be cured!
For example, an organized Palliative Care should also incorporate patients with kidney failure who cannot afford transplant or dialysis. Why it should not incorporate very aged people also who are suffering from dementia, immobility etc!!
The Guardian: Would you discuss what facilities, especially number of doctors, nurses, medicine, beds, equipments and others are available at CPC of BSMMU to provide treatment and services to the patients?
Professor Nezamuddin: CPC has a dedicated team of ten doctors, fifteen nurses and few ancillary staffs provided by the university. A running project of Higher Education Quality Enhancement Program (HEQEP) of University Grant Commission (UGC) and some benevolent funding from two organizations named Rotary Club of Metropolitan Dhaka and Afzalunnessa Foundation has also enabled us to recruit a few more team members like Palliative Care Patient Attendants (PCAs). The team runs a seventeen bed In- Patient Unit (IPU) as well as a daily Out Patient (OP) consultation besides taking part in the education and training program organized by the centre.
CPC also runs a Home care team and a twenty four hour telephone service for the patients and the affected families. We also have a small research cell to develop an evidence based approach. The Centre also acknowledges the contribution of the volunteers who are mostly students and is an example of community participation in delivering proper care for this unique group of patients.
We also acknowledge that Palliative care is a multidisciplinary approach and all other disciplines of the university also come forward to give us a hand whenever it is needed and asked for.
The Guardian: Would you tell us what kind of patients come to CPC and what treatment and services are provided to the patients. Do you do anything for the affected families?
Professor Nezamuddin: Till now, most of the patients that attend our services are Cancer patients, but lately we have started getting patients referred by other disciplines like neuro- medicines and surgery.
The most common sufferings that these patients complain of are pain, breathlessness, bad cancer wound, nausea, vomiting, loss of appetite, severe weakness, lethargy etc. Attending to these complains we also try to take a holistic attitude and to identify the psycho social domain as well as the spiritual issues of sufferings. An important medicine that is available with us is oral Morphine, the gold standard drug of choice for cancer pain.
The Guardian: You mentioned about Palliative Home Care Service. Why and for whom this care is necessary?
Professor Nezamuddin: Home care is a unique essential part of any standard Palliative Care set up in the world. The idea is that if a patient cannot reach the service for any reason, the care itself should reach the door step of the patient in any civilized society. Imagine a patient who has not got any one to take him to a hospital, or poorest of the poor, a destitute at least has someone to visit and comfort them. Nevertheless, the service is mostly with an aim of empowering the family and to help the family to learn as how to take care of their patients.
You will probably agree that in the long run, an institution based service alone cannot meet the need of these patients 24/7 days. It is remarkable to witness the extra ordinary level of nursing and social care that families are willing to share for their loved ones in our society. Tasks that would necessitate a visit from a community nurse in developed country are readily taken up by family members here. This opportunity to work together can help a team building capacity, empowers a relatives to make a difference to the quality of life of their loved ones as well as maximizing the use of the skills of the home care program.
No doubt, home care service has its own challenges, requirements, and constrains but it is an essential service for these patients.
The Guardian: In this context, would you discuss the overall activities and services of CPC Home Care?
Professor Nezamuddin: A trained nurse led home care team visit 3-4 of those patients a day who are registered with the CPC and live within 20 kilometers of the Centre. These are the patients who cannot reach the centre due to symptom severity or during the terminal stage or for any other acceptable reason. The team also visits bereaved families occasionally. A doctor visits a patient only when the nurse feels it necessary. This service is entirely free of charge and is being maintained by benevolent funding from few organizations and individuals.
The Guardian: We understand that CPC is providing treatment and services for the patients affected with difficult and deadly diseases like cancer. So, please give us an idea about what cancer is and how many types of cancer are already discovered by physicians.
Professor Nezamuddin: This is another important issue that we all should have some basic understanding. Cancer is an abnormal, uncontrolled and excessive growth of any particular type of body tissue which is no doubt harmful to body. Now, depending on the type of tissue and its characteristics and the organs involved, there are more than two hundred types of cancers that may affect human beings
The Guardian: And is cancer curable?
Professor Nezamuddin: There is no straight Yes or No answer to this question. Cancer is the name given to a group of more than two hundred conditions depending on the site of origin. Another very important issue is at what stage the cancer has been diagnosed! How far it has already grown, is it in its early stage or has it already spread to other parts of the body from its site of origin!
Considering these and few other medical issues, I would broadly say that, of all the cancers one third is curable, one third is totally incurable and the rest one third, with adequate treatment, which is almost always expensive, one may survive for more than five years. I mention of expenses particularly because every day we witness so many patients dying leaving their families in a miserable financial condition. We often say that not only the patient dies; the family also dies in a sense for pursuing cure when the disease is incurable.
The Guardian: CPC is also providing treatment and services for the patients affected with another difficult disease like lymphedema. Please discuss the reason and treatment of this disease.
Professor Nezamuddin: Yes, we do run a lymph edema clinic once week! Lymphoedema is not a disease itself but is a known complication of another common cancer that is breast cancer particularly after the surgical treatment or radiotherapy. The condition may cause massive swelling of upper limb of the affected side. What is important to know that this is an irreversible condition but if proper care is taken of this condition, much of its sequel can be kept under control and much better Quality of life can be maintained.
The Guardian: In this context would you also discuss Colostomy care of CPC?
Professor Nezamuddin: Colostomy is an artificial opening created by a surgeon in the tummy of a patient through which he or she passes stool. It can be a temporary or a permanent one depending on the intention of the surgeon for the betterment of the patient. There are some simple steps regarding care of the colostomy. If these are meticulously done, the person should have much less difficulties or embarrassment even with a colostomy. Many people are living a good life with colostomy even without being noticed by others!
Whenever we get a patient with Colostomy, we explain the patient and also the family care giver about how to take care of the colostomy. Things like what to do and what not to do. We also give them a leaflet where frequently asked questions are answered with diagrams and useful tips are given.
The Guardian: In this context, Please mention the number of patients already served and treated by CPC. Would you also tell us the number of patients already affected with different difficult diseases like cancer, colostomy, lymph edema and others in Bangladesh?
Professor Nezamuddin: I’ll give you an example first. In the initial four months of opening the service in 2007, we saw only fourteen patients in the Out Patient consultation. Next year the number rose to 343, in 2009 it was 415 and in 2014, it was 1264. So, the steep increase in number of patients attending the OP consultation givs you an idea about the demand of such a service.
The Guardian: Since Palliative Care is a new idea in Bangladesh, what role or activities are being taken by BSMMU to popularize the Palliative Care system in Bangladesh as well as to make the people aware of this care across the country?
Professor Nezamuddin: Initially, the initiative in BSMMU began as a service in 2007. Since the inception of the Centre for Palliative Care (CPC) in 2011, it has taken over the pioneering role which not only includes development of a model replicable service, but also has been pursuing awareness creation amongst health professionals as well as community at large. It has also been trying to convince the policy makers to incorporate palliative care program in the main stream health care program.
We have been organizing seminars, workshops as well utilizing print and electronic media as well to inform people that palliative care is a basic human right! You can consider this interview as a part of this program. Side by side, there are education and training program for doctors and nurses. We do have program for volunteers also.
The Guardian: Would you also inform us what opportunity is available at BSMMU to receive specialized training or higher degree on Palliative care?
Professor Nezamuddin: Our best program, so far for the doctors and nurses are Six Week Basic Certificate Course for doctors and nurses! For dedicated palliative care volunteers, it is a three day introductory with 8 days clinical exposure which is optional.
The Guardian: Would you discuss the limitations, achievements and future of CPC?
Professor Nezamuddin: Well, limitations are general as well as unique to this part of the world. In general, it is the universal mind set of the people. Modern age lives in prevention and cure oriented death denying health care system predominantly!! Incurability is neglected, ignored or overlooked. More so, in the developing world where it is further complicated by the economic issues.
The end result is, incurably ill patients suffers unnecessarily in pursuit of cure and due to lack of appropriate knowledge and skill to reduce sufferings. For example, cancer pain can be relieved and patients can be given a painless life before it ends. But the reality is, most of the patients in our country do not have access to knowledge and skill based approach of pain relief, neither the potentially affordable gold standard drugs for cancer pain relief is available homogenously in our country. Similar is the situations for many other sufferings in these situations.
Regarding the achievements, all I can see that the journey leading to a nationwide palliative care program has been initiated. It is a long way to go. All we hope that one day Palliative care program will be included in the primary health care program. We have witnessed that safe birth of a new born has got due attention from all concerned in the community. We believe that, a painless, less suffering at the end of life leading to a safe death in a helpful society should also be given due priority in the face of incurability. Palliative care should be considered as a basic human right in Bangladesh.
The Guardian: We know that there is a Palliative Care Society of Bangladesh. Would you assess the roles and activities of this society?
Professor Nezamuddin: Palliative Care Society of Bangladesh (PCSB) is a community based multi professional registered charity with the sole aim of developing palliative care program in Bangladesh. At present, it is closely associated with the activities of CPC. For example, it is the lead organization which supports the home care program and twenty four hours telephone service of CPC. It also ensures that no patient is denied the service due to financial constraints. It also often provides support to the financially devastated family after the death of the cancer patients.
The Guardian: In this connection, would you also say what links or interactions CPC, BSMMU maintains with similar institutions or organizations at home and abroad to update its academic and professional knowledge and capacity?
Professor Nezamuddin: CPC has close links with a number of regional and international organizations like Institute of Palliative Medicine (IPM) in Kerala, India, Asia pacific Hospice & Palliative care Network (APHN) based in Singapore, Hospice UK and The world Hospice and Palliative Care Network (WHPCA). At home it has closed link with Rotary Club of Metropolitan Dhaka (RCMD) and Afzalunnessa Foundation.
I should also mention the first person who introduced the concept of Palliative Care to BSMMU back in 2003, One Dr. Graham J Arthurs, OBE, a Rotarian and Philanthropist from UK. He has been a constant source of inspiration for all of us here till date.
The Guardian: In the end, please give your valuable message to your fellow colleagues and also for the people of Bangladesh
Professor Nezamuddin: The message is very simple, when adding days to the life of an incurably ill person is not possible, we all should try to add life to the remaining days of the person. The world has gained tremendous knowledge and skill in this subject. It is not expensive but needs developing a proper attitude towards the issue and work together. It has already been evident that a community based approach to this agenda can really change the end of life of these patients and the affected families. We all must give this issue its due importance. Then, and only then our own end of life can be safe and pain free.