The experts include officers from Kenya Hospices and Palliative Care Association (KEHPCA), Nursing Council of Kenya (NCK) and KMTC.

The process that lead to the conceptualization of the idea of a palliative care course in Kenya started three years ago with KEHPCA training trainers of trainees from 17 institution offering Medical, Nursing, Pharmacy and Dental training.

KEHPCA’s Executive Director Dr Zipporah Ali said that this process was made possible through funding from Princess Diana Memorial Fund, True Colors Trust and African Palliative Care Association (APCA).

“Our team met with the KMTC officials sometime last year to see the possibility in actualizing the development of a palliative care curriculum in an institution of learning.” Dr Ali said.

According to NCK Education Officer, M/s. Mary Nyamboki, a needs assessment for the course indicated that most officers in the health field are not able to help the dying die peacefully even after their medical training.

This, she said, prompted the choice of a module of palliative care education for nursing students, after several suggestions were floated on what type of training would deliver the required skills to be undertaken at the KMTC.

“We are involved in setting standards for this course whereby we are looking at the tool for setting exams for palliative care and the guidelines to approve an institution offering this course.” She said.

She said that though for a start they will have the curriculum running at the KMTC, there is a projection of having the course offered by other training institutions and this will require regulation to approve such institutions to offer palliative care training.

M/s. Nyamboki said that they intend to run the curriculum as a distance learning course with students having several sessions with their tutors at regular intervals.

“The palliative care content is large and we intend to have the syllabus we are developing run for one and a half years.” She said.

The education officer said that the syllabus content aims at building and polishing on what the medical and nursing students know as may be demanded by palliative care needs adding that the clinical placement tool will help in assessing and gauging performance of students in the field.

“We are also developing a tool for setting exams for the course through which students will be examined for certification and afterwards forwarded for registration.” M/s. Nyamboki said.

The Head of Nursing Department at KMTC M/s. Mary Kahiri said that they have identified 25 lecturers to implement the course.

She added that 29 of their 31 campuses across the country are offering nursing and this number offers a substantial ground to kick start the course.

“Palliative care nursing has been missing for long and the demand is too high due to the rising patients with chronic illnesses.” M/s. Kahiri said.

M/s. Kahiri said that the course will run for 18 months with both theory and clinical practice taken into account.

She added that they have identified 11 sites offering palliative care services for clinical placement and more will be added in due course.

“We have the necessary infrastructure to implement the curriculum and we have the full support of the KMTC board. Once we finalize all the tools, the curriculum will go through the KMTC board and finally forwarded to the regulatory board for approval.” She said.

This course, she said, will reduce the palliative care gap that is experienced in the country as qualified nurses would be in a position to offer these services to patients at the point of diagnosis and also at the family level.

M/s. Kahiri said that the process has not been without challenges as they had to draw all plans from scratch, there being no learning institution offering such a course in the country.

“The development of the tools has been challenging but the far we have come, we are positive that we shall succeed.” She said.

She added that there are plans in the near future, once the course takes root, to have training for more trainers to increase the number of lecturers involved in executing the course to reach more and flood the country with palliative care professionals, sentiments that were echoed by M/s. Nyamboki of NCK.

With plans rolling as per schedule, the first intake for the course is intended to take place in September this year.

Who a nurse is

PSYCHOLOGIST - Nurses are considered the best emotional supporters. They always guide patients through means of effective and therapeutic communication process. Whenever patients verbalize their feelings, the nurse cannot just stand by his/her own work but sits at the bedside trying to open his heart and listening with all the patient’s feelings..

GUIDANCE COUNSELOR – A dying patient conceals the need to be led always, not only from family but also from others especially to primary care provider. Nurses always guide them in terms of providing nuggets of wisdom which would at least alleviate their sufferings.

PREACHER – All patients regardless of their race have hope that need uplifting of their spiritual aspects of life. Nurses always sacrifice themselves to impart knowledge with regards to matters between life and death. This uplifts patient’s spirituality aspect with no basis of religion or beliefs.

TEACHER – Just like children, nurses act as teachers especially in giving patients information about their health conditions. Patients are taught how to handle and manage their health situations through skills that they can easily and appropriately administer by themselves.

RELATIVE- As the saying goes, ‘put yourself in other’s shoes’ nurses treat their patients as if they were their siblings, parents or close relatives. The feeling of the dying patient and the sympathy or grieving of his family is likewise the feelings of the nurse.

COMEDIAN – This role cannot be applied to all nurses but whenever a nurse has the pride to express a sense of humour, he/she becomes a comedian to the dying patient. This will at least remove or lessen patient’s anxiety and depression. Remember that laughter is a reality that sometimes heals patients.

CAREGIVER – Nurses are always regarded to be the primary care providers because in a whole shift, their role revolves around checking and seeing that everyone is in good condition. When a patient cries out of pain, the nurse responds immediately by giving any type of care to lessen the discomforts felt by patient.

TRUSTED MESSENGER – The nurse is always ready to accept any testimony from the dying patient. In the likely event that the patients feels uncomfortable to reveal secrets to their family members, the nurse is the only trusted person with every word from the patient’s mouth and this demands becomes an obligation and duty on the part of the nurse to do whatever patients wish to be done.

RESCUER – Nowadays, patients expects more immediate and emergency care from a nurse rather than a doctor due to their closeness whether at night or during the day. Doctors have a busy schedule and at times they have rush hours when they need to attend to emergencies ending up not staying beside a patient for a longer period of time. Their major role is to check the condition of the patient on that day, prescribe medications, write orders from the chart and move out of the hospital. Nurses are rescuers as they are first in line to recover a patient’s life especially during emergency cases.

MOTHER – Mothers know what is best for their children and nurses also know what is best for their patients.

How different are they from their colleagues?

These nurses have unwavering focus on end-of-life care. Palliative care includes 24-hour nursing availability to manage pain and symptoms and support to the family. By providing expert management of pain and other symptoms combined with compassionate listening and counseling skills, a palliative care nurse promotes the highest quality of life for the patient and family.

A palliative care nurse strives to achieve an understanding of specific end-of-life issues from the perspective of each patient and his/her family regardless of the setting, unlike the nurse in a health care facility whose approach is more on preventive, curative and rehabilitative. To accomplish this, nurses collaborate in a cultural assessment of the patient and family and provide culturally sensitive care.

Palliative care nursing is not only practiced at the bedside like nursing within a health care facility. Nurses, consistent with their individual educational preparation, experience and roles, promote the highest standards of end-of-life care through community and professional education, participation in demonstration grants as well as in end-of-life research. This is necessary as the society needs change and awareness of their people through public policy forums, including the legislative process.

They assists patients with hygiene and grooming, feeding them if they are unable to so themselves. They also manage anti-anxiety medicine like morphine if needed. This differentiates a nurse in a health care facility, who rarely addresses this issues and dwells more on the hospital daily routine.
More in next page…

This was the message from the Chair of Rwanda Medical and Dental Council (RMDC) Professor Emile Rwamasibiro while addressing delegates at the Kenya Medical Association (KMA) 41^stAnnual Scientific Conference & Annual General meeting.

Held at Lukenya in Machakos, the main theme of this year’s conference was; ‘Healthcare Delivery in a Devolved Government System’

In Rwanda, Prof. Rwamasibiro said that one man and two women are elected in every village and trained in management of focused health issues.

“These men and women are the ones who facilitate outreach and sensitization activities and are rewarded on performance since their role is not a full time payable job. They are enthusiastic as they are elected by locals and given high status in the village.” He said.

Through such an approach, the RMDC chair said most health issues have been tackled making people in the village know more than their city counterparts.

“Do not fear to embrace innovation strategies and choose developmental models that work for you.” Prof. Rwamasibiro advised.

The Permanent Secretary in the Ministry of Medical Services M/s. Mary Ngari said that the constitution stipulates that every person has a right to the highest attainable standard of health, which includes the right to health care services and reproductive health care.

M/s. Ngari said that the ministry has repositioned itself to fulfill this right. She challenged health care workers to be in the forefront in leadership to ensure patients receive high quality services despite devolution adding that it (devolution) is being done with a lot of care.

Palliative care providers and representatives were among the delegates attending the conference where non-communicable diseases and palliative care were given a spot light.

Kenya Hospices and Palliative Care Association (KEHPCA)’s Special Coordinator for Access to Pain Relief and Palliative Care, Dr Esther Muinga addressed delegates on the Integration of Palliative Care into the Kenyan Health Systems.

Dr Muinga said that through the Waterloo project, a time-limited initiative to significantly improve access to palliative care in Malawi and Kenya, 115 health care providers have been trained in end-of-life care in the country.

She said that the aim of the project is to improve the quality of life of patients affected by HIV/AIDS and other life limiting illnesses.

This, she said, is after a research carried out indicated that the need for education was paramount in pain management, sexuality, communication, care for carers, breaking bad news, nutrition and death & bereavement among others.

“As a result of this project, palliative care has been integrated in 11Level 5 Hospitals and additional 30 Level 4 Hospitals are targeted for similar integration this year.” She added.

In addition, Dr Muinga said that there has been significant recognition of palliative care in both ministries of health that have been operational in the previous government as a result of continued advocacy activities.

She sighted challenges in the integration as shortage of staff, lack of space within hospitals for palliative care units, lack of interest in palliative care from those chosen for training and deployment of trained staff to other areas.

This year, Dr Muinga said that there are steps being undertaken to further palliative care in Kenya which include;

• Inclusion of pharmacists in palliative care
• Involvement of 30 Level 4 Hospitals in palliative care training
• Provision of oral morphine as an important analgesic in government hospitals through Kenya Medical Supplies Agency
• Inclusion of palliative care in underadecuate training.

Mr. Elijah Musau, head of palliative care department at Machakos Level 5 Hospital gave a hospital story on integrating palliative care.

Mr. Musau said he has encountered a case where medical staff were talking about a patient’s illness without knowledge that the patient was overhearing them having not been informed, adding that this is illegal.

He said that introducing the new concept at the facility was hardly embraced by the medical staff who before understanding what palliative care entailed could for example shout at a patient to make their bed and stop pretending.

“Put yourself in the shoes of your patient. If that was your parent, child or relative, could you wish them to be treated the way you are treating the patient?” He asked.

Though given a building earmarked for demolition, Mr. Musau said that through funds from KEHPCA, they managed to refurbish it to a modern unit.

“Before renovation, patients used to wonder if they had been referred there to die.” He said.

He said that there exists effective and inexpensive methods of pain and symptom management, terming the Continuous Medical Education (CME) that has helped in training health care workers in palliative care as an effective tool.

He told delegates that palliative care is provided by an interdisciplinary team of health care providers and that it can be started anywhere.

Addressing a concern raised by a section of the delegates that having stand alone units would lead to stigma associated to separation from usual health care, Mr. Musau said that palliative care providers most times offer services within wards and the separate units create a conducive environment for counseling and sharing with family members, a service that cannot be offered in the wards.

“It also helps us to attend to patients referred from other centers, who are not admitted in the hospital.” He added.

On challenges of establishing a palliative care unit in a Level 5 Hospital, Senior Nursing Officer M/s. Lydia Warui from Nyeri Provincial General Hospital (PGH) said that cultural barriers limit their service provision.

She said that home based care is not well accepted among some communities who insist that a patient should stay in hospital.

“Chronic illnesses are associated with curses and discussion of end-of-life issues is not appreciated by some people.” She said.

M/s. Warui said that prescription issues remain a challenge as nurses who are mostly in charge of palliative care units are not allowed to prescribe morphine, adding that there is hope as KEHPCA works to put in place protocols and palliative care guidelines.

She surprised many when she projected a picture of unused toilets on the screen, saying that it was the place allocated for Nyeri Palliative Care Unit which they later managed to renovate to habitable standards.

Stella Kubania presented a case of Meru Level 5 Hospital with regard to palliative care in a Government Health Institution.

M/s. Kubania said that the palliative care unit has a capacity of 311 beds with a total of about a thousand admissions and 2900 outpatients.

She said that the hospital has purchased 100grams of morphine this year which would help the unit in management of patient pain.

“We occupy a two-roomed premise that has a kitchen and a restroom where we converted the kitchen chimney to be a strong room for morphine storage.” M/s. Kubania said.

According to the senior nursing officer, the opening of the unit has enabled most patients to be enrolled for the services offered at the unit and their quality of life has greatly improved.

“Patients who would have otherwise gone home without care have been enrolled and followed up in the unit and morphine consumption in the hospital has gone up.” She said.

Her wish is for the government to offer cancer treatment and provide palliative care drugs to promote palliative care in all corners of the country.

Mediamax Network Limited corporate affairs officer M/s. Nyatichi Nyasani faulted the media for poor health news coverage saying that most media houses have no dedicated programming for medical journalism.

“The media tends to focus on negative stories since they consider such stories to be newsworthy yet medical stories can sway opinion.” M/s. Nyasani said.

She said that in the devolved government, the media needs to review the success of governors in the provision of health services and bring such successes to the limelight.

The individuals behind fundraising go an extra mile in search of funds to meet their yearly budget but few understand the tactics they use in raising the required funds.

As shared by Nyeri Hospice fundraising officer M/s Perister Murugi, seeking for funds can be an easy yet difficult task depending on the individual’s interest and passion in hospice work.

M/s. Perister says that a fundraiser, like in any other profession, needs to plan in advance to be able track progress.

“I need to do a lot of research online to gather as much information as possible about hospice care so that if a potential supporter asks a question, I am in a position to answer. It not in order to fail answering a question from a potential donor on what your organization is involved in.” She says.

M/s. Perister says that the initial stage when approaching potential donors is to explain to them what you do and try to develop their interest in it.

She adds that it is important to explain how supporters are to benefit from an association with your organization as no one would wish to just give without gain.

“Take it as a business relationship and always do not bombard your targets with donation information in the first meeting but make them understand what you do and create a good rapport.” She says.

The fundraising officer says that there is a perceived challenge in dealing with different classes of individuals or organizations as she at times wonders what to tell high profile people, only to discover that they are normal people to strike a conversation with.

She adds that once you set the relationship, always call to say hello so that they do not feel as if you remember them only when you need their support.

“There are individuals and organizations out there willing to help but they have no information on what hospice does. It is therefore our role to pass this information to create a channel of possible donations.” M/s. Perister says.

She advises that once you get individuals or organizations sign up as friends of the hospice, make them feel part of the family by keeping in touch often to know how they are doing and inviting them to your events. “Even if they fail to show up, the bond still remains for future support.”

“Most organizations think am a media personnel and they ask a lot about it, but it is a good feeling as I get to meet with various people from many organizations.” She says.

According to Perister, the shift in focus of most organization especially in the Corporate Social Responsibilities (CSR) is a challenge to fundraisers.

“An organization may be supporting a hospice activity but in their next project they choose to support a different idea away from hospice activities.” She says.

This, she says, forces one to keep looking for new sponsors and donors to support hospice work. Economic challenges faced by supporting corporates also affect the flow of funds from donors as they cut their financial support.

M/s. Perister says that teamwork is essential in creating a network of possible supporters and one need to attend events to make friends.

“The most important thing is to believe in oneself. It is only through this that you can convince people with your agenda.” She says.

On academic qualification, M/s. Perister says that passion for the work is all that matters. “I have a passion for the patients and once I raise funds, I am happy to know that they will receive services for a particular period of time.”

Other than being confident, Perister advises that the mode of contact should be reliable to keep communication in check as changing communication lines often may irritate donors or supporters.

“Groom yourself to keep the good image for potential supporters and donors to feel good and comfortable about and around you.” She says.

Finally, the fundraising officer asks those in similar positions to believe in themselves and know how to find their way into cold people’s hearts.

“To be a philanthropist is a rare breed. Not everyone is willing to help” She concludes.

Ms. Eunice Mwangi, the fundraising officer at Nairobi hospice adds that if one wishes to use raffles to raise funds, permission from the Betting Control & Licensing Board (BCLB) as they need to witness the draw for fairness and openness.

Ms. Mwangi says that you should remember to do a thank you note at the end of a fundraising activity to all supporters and donors informing them of how much you raised and how you intend to spend the money in achieving your goals as reported to them.

“Fundraising activities are unique as what works for one organization may not work for another. You need to look for what can work for your organization, taking into consideration your potential donors and supporters.” She advises.

Speaking after a three-day training for pharmacists on palliative care, the Senior Deputy Chief Pharmacist in the Ministry of Medical Services Dr Elizabeth Ominde Ogaja said great progress has been made with regard to availing finances through its supplies division to purchase the pain management drug among others.

“We are making a case to Kenya Medical Supplies Agency (KEMSA) to try and see if the supply of morphine could be made constant.” Dr Ominde said.

She said that to achieve this, an elaborate data recording system has to be instituted by all departments to enable the ministry procure as per the demand of the country.

Dr Ominde said the training of pharmacists in palliative care should have started long ago as they are the custodians of these drugs and leaving them out means creating a gap in pain management that is crucial in end of life care.

“My hope is that this training be institutionalized to enable pharmacists have knowledge in palliative care as they undertake their studies.” She said.

Following a recent study visit to Uganda to familiarize with how palliative care has taken root, Dr Ominde said they are looking for possibilities of having a central morphine reconstitution center to make morphine solution in accordance to international standards and for better control.

Currently, morphine powder is reconstituted at hospices and palliative care units with the help of qualified personnel.

“If we are to meet the Ugandan threshold, we have to sit at policy and service delivery level and agree on where to start and make changes to ease the access of palliative care to all.” Dr Ominde said.

The study visit was organized by Kenya Hospices and Palliative Care Association (KEHPCA), Africa Palliative Care Association (APCA) and Global Access to Pain Relief Initiative (GAPRI).

Officials from the Ministry of Health, Pharmacy and Poisons Board, Kenyatta National Hospital (KNH) and the Nursing Council of Kenya participated in the two-day study tour.

With regard to the new form of governance, Dr Ominde said there is need for a forum for governors to discuss matters of chronic pain as this requires extra funding besides the set budget for health in these counties.

“We have previously been focusing more on infectious diseases only to discover that non-communicable diseases have a higher cost in treatment and management and their preference is on the increase.” She said.

The senior deputy chief Pharmacist said that Kenya has a bright future and all we need is to focus.

She added that there is need to have regular forums with the trained group to share as such a team is the one to move the agenda forward with doctors and everyone in the system they work in.

Dr David Wata, a clinical pharmacist at the KNH said the training came at the right time as they have to be part of the palliative care agenda to make a good contribution in the management of patients with life limiting illnesses.

“If a pharmacist is not aware of what palliative care entails, there could be a barrier in provision of pain management to patients with life limiting illnesses. Palliative care involves team work and all parties must me involved.” Dr Wata said.

Since these pharmacists did not have such training while schooling, Dr Wata said such a forum was crucial to equip them with knowledge in palliative care.

The Executive Director of KEHPCA Dr Zipporah Ali thanked the participants for their dedication and willingness to attend the training.

“I am really encouraged to see that the future on health in Kenya is bright and we assure you of our support in your field. We are releasing you as champions and we urge you to take the fight against pain wherever you will be working.” Dr Ali told the pharmacists.

She said that once the palliative care policy is in place, KEHPCA will work together with them in its implementation to alleviate pain from patients with life limiting illnesses.

Dr Joe Kanja from Meru Level 5 took the pharmacists through documentation with regard to opioids saying that this is the only way to ascertain the demand in the country.

“Documentation helps in accountability besides being a legal requirement and can help us in research on opioid use in the country.” Dr Kanja said.

He said that if we can replicate the HIV/AIDS care model in cancer and home based care with regard to palliative care, we could be many steps ahead as a country.

Dr James Angima of Kisii Level 5 Hospital said he has learnt a lot in pain management especially from the WHO pain management ladder.

“The more people know about this, the more we could save our patients from pain and maximize pain management in the country.”

He said that it was until the training that he got an understanding that morphine can be administered through the rectal route if the patient is not able to swallow.

This was the first pharmacists training organized by KEHPCA and the Ministry of Medical Services and funded by GAPRI.

The Special Coordinator for Access to Pain Relief and Palliative Care at KEHPCA Dr. Esther Muinga said that the training aimed at empowering pharmacists as advocates of palliative care in the institutions they work in and improve team work amongst other health care workers.

“They are crucial members in palliative care in terms of ensuring availability of essential medicines and their appropriate use.” Dr Muinga said

25 pharmacists and pharmacy technicians were trained from KNH, 11 from level 5 hospitals, 9 from level 4 hospitals and 3 from private hospitals.

The three day training for paralegal persons aimed at equipping participants with knowledge and give them an opportunity to respond to legal needs, guaranteeing those in need of palliative care that they have access to legal services and support and encourage them to continue interacting with the legal community.

Kenya Hospices and Palliative Care Association (KEHPCA) in collaboration with hospices, palliative care doctors, lawyers and human rights organizations has come up to address the legal issues which include inheritance, making medical decisions, will writing among others, faced by  majority of patients suffering from life limiting illnesses in Kenya.

Opening the seminar, Ann Gathumbi, a programs manager with Open Society Initiative for East Africa (OSIEA) stressed the importance of offering comprehensive palliative care to patients including addressing their legal concerns which can only happen if there are persons trained with the right skills.

KEHPCA’s Executive Director Dr Zipporah Ali, pointed out that health care service providers abandon patients by sending them home often without medication when ‘there is nothing more to do for them’ in hospitals.

“This is a time when patients have critical clinical, psychosocial and spiritual problems and KEHPCA has been involved in advocacy on palliative care and pain relief as a human right as well as empowering patients and health care workers in various parts of the country.” Dr Ali said.

According to Dr Ali, the continued advocacy has achieved the following;

• Palliative care has been included in the Kenya Health Law and Patient Charter
• Training hospice and palliative care workers on legal aspects of palliative care
• Continued training of lawyers/paralegals on palliative care
• Production of information leaflets for patients, families and health care professionals which have been very helpful as per reports from hospices using them

Some of the challenges highlighted by Dr Ali during the session include lack of enough trained health care professionals in palliative care in Kenya hence need for continued advocacy to change attitudes on use of opioids for pain control.

She said that limited access to essential medicines, space for palliative care in hospitals, policies to address palliative care and funding remain challenges that the national association and other stakeholders are struggling to overcome.

Kenya Legal and Ethical Issues Network (KELIN)’s Program officer M/s. Melba Katindi outlined the legal instruments on the rights of the child as the Constitution of Kenya (2010), Convention on the Rights of the Child (1989), African Charter on the Rights and Welfare of the Child and the Children’s Act (2001)

“The value of play, both as a right and a distractive therapy, help children cope with pain and discomfort.” She said.

She further identified interventions that paralegals and health care workers can offer in a child with palliative care needs as follows;

• Recognize and relieve pain, discomfort and suffering in children of all ages
• Ensure early diagnosis and treatment of children for chronic, life-limiting illnesses and conditions
• Identify children at risk of harm and in need of protection from violence, abuse, neglect, exploitation, poverty, stigma

Belice Odamna from KELIN, and an advocate of the high court, addressed the issues with the state having obligations to apply human rights in palliative care, just like in other aspects where the government has a role to respect, protect, fulfill and promote the rights of all citizens.

In her discussion on making a will, she identified the following as the advantages;

• It enables the testator to maintain control over property. This is especially important for a person with a spouse and children.
• It avoids rules of intestacy where the shares of the estate which the next of kin receive are arbitrary.
• It enables the estate to be well administered since the testator personally appoints an executor whom he trusts and believes to be capable of managing the estate
• It allows for immediate administration of the estate following death unlike the position under intestacy where letters of administration have to be granted before one is authorized to deal with the estate. The grant of letters takes time which may expose dependants to inconvenience and hardship.
• Full disclosure of the deceased’s property is enabled by a will, without which undisclosed property could be lost if the family never knew of its existence.
• It gives the family peace of mind and avoids disputes over the sharing of the deceased’s property.
• It benefits persons outside the immediate family circle.
• It enables a parent who has minor children to appoint guardians to take parental responsibility for the children should he/she die while the children are minors.

KEHPCA’s Education and Research Officer Dr. Asaph Kinyanjui defined ethical dilemmas in palliative care as situations arising when equally compelling ethical reasons both for and against a particular course of action are recognized and a decision must be made.

A participant from Kimbilio Hospice was in pain discussing how he was recently caught up in a situation where two patients required oxygen and yet only one machine was working.

The training was a success characterized with knowledge sharing, informative discussions and provided a great opportunity for networking between the participants and advocates.

KELIN coordinated an interactive session on the last day between five pro bono lawyers who offered their time to listen and offer legal support to participants with cases that needed advice and legal representation in court.

KEHPCA and KELIN look forward to greater interactions where paralegals and pro bono lawyers would offer support to many patients in palliative care as a way forward in this project.

The AAHPM/HPNA annual assembly is designed for physicians, nurses, and other healthcare providers interested in acquiring, maintaining, or expanding the skills needed to function effectively in the field of hospice and palliative care.

As leaders in promoting excellence in hospice and palliative care, AAHPM and HPNA combine their expertise to advance the field, thus meeting the shared goal of improving the quality of life for patients and families facing serious or life-threatening conditions.

Both Dr Munyoro and Dr Ali were among the six doctors from developing countries who were selected to participate in the assembly and share their experiences with others. Participants from other developing countries were Dr Christian Ntizimira from Rwanda, Dr Kehinde Obembe from Nigeria, Dr Dinesh Chandra Goswami and Dr Shantanu Sharma, both from India.

The AAHPM/HPNA provides an opportunity for health care professionals and others working in hospice and palliative care to gain knowledge from leaders in the hospice and palliative care field, offering an opportunity to be inspired and invigorated by captivating speakers, thus reminding participants why they chose to work in the field of palliative care.

“I was very impressed by the number of doctors and nurses at the assembly and to listen to their vast experiences in patient care as well as  influencing policy in palliative care in the USA. Although the developing counties are not at par with the developed countries, it was interesting to note that we have many similarities and face similar challenges in making palliative care a priority in our health care systems. Learning from our colleagues and friends from the developed countries on how they have been able to address some of the common barriers to hospice and palliative care is important.” Says Dr Ali.

Although Kenya does not have a free standing policy on palliative care, palliative care is slowly being integrated into the public health care system; it has been included in the National Cancer Control Strategy as well as the draft National Cancer Treatment Guidelines. Currently, there is ongoing advocacy work to have it included in the Country Action Plan on non-communicable diseases (NCDs).

Dr Ali says that the assembly had very engaging plenary sessions as well as workshops. In one of the plenary sessions both David Oliver and  Debra Parker Oliver shared their story on having an exit strategy that was very captivating. Kevin O’Connor facilitated a very inspiring workshop on Leadership titled ‘You are Just Not A Doctor Anymore’ that opened our minds on leadership as doctors.

At the AAHPM/HPNA Annual Assembly, the doctors were able to interact with key palliative care champions like Dr Frank Ferris who has been an inspiration and mentor to them as palliative care leaders.

“We did enjoy our stay in New Orleans. The people were great and the food very unique. We thoroughly enjoyed the dinner cruise with jazz on the Mississippi River that Dr Alva Baker and his lovely wife invited us to, as well as Dinner at Irene’s with Dr Stephen Radwany and John Mastrojohn of NHPCO.” She says.

Dr Ali’s parting shot; “Thank you AAHPM/HPNA and in particular, Jennifer Bose, for all the great work you are doing.”

Opening the event held in Nyeri Town, the Deputy Medical Superintendent Dr Julius Macharia said that palliative care is a key component in the management of chronic illness that the country has so far not laid much emphasis in.

Dr Macharia said that the focus to communicable diseases has been emphasized at the expense of non-communicable diseases.

“Refocusing on attending to the two sets of diseases would relief us the burden we are currently experiencing, as non-communicable diseases (NCDs) are on the rise.” He said.

He added that resources should be channeled to both ailments since inattention to NCDs has often led to patients suffering in silence.

“Patients die with a lot of discomfort which is not a good gesture in the medical field. A human being deserves to live and exit the world peacefully.” Dr Macharia said.

The deputy medical superintendent said that KEHPCA has teamed up with developmental partners to reinforce the need for palliative care, not only in hospices but also by integrating it in hospitals.

“We also want the level 4 hospitals to have palliative care integration in their services to ensure that patients receive holistic care. We should be able to walk with our patients from diagnosis to the day they depart and even beyond, with their family members.” He said.

KEHPCA’s Education and Research Officer Dr Asaph Kinyanjui took attendants through palliative care principles and overview of palliative care in Kenya, introduction of THET project and meeting expectations and pain management in palliative care.

While facilitating, Dr Kinyanjui said that THET project aims at driving the advocacy agenda in palliative care both at the national and county level.

“The project’s activities include staff capacity building, both health care workers and the community, to offer holistic care and be able to train others.” Dr Kinyanjui said.

He said that after its accomplishment, the project aims to improve palliative care service delivery in the regions selected (Nyeri, Eldoret and Homa Bay) as well as strengthen referrals and partnerships.

Though transfers and change of profession of palliative care trained health care workers remains a challenge, Dr Kinyanjui said that the project aims at training officers who would in turn capacity build other health care workers to fill the gap.

He added that the Kenya Medical Supplies Agency (KEMSA) has agreed to procure two kilograms of morphine in its effort to ensure it is available in the government hospitals that have already integrated palliative care in their services.

Mrs. Lydia Warui, Nursing officer in charge at Nyeri PHG palliative Care Unit, facilitated the meeting with an elaborate state of palliative care services in Nyeri region including the PGH.

Mrs. Warui said that it is important for health care workers to walk the journey of end of life with the patient from diagnosis so that they are not stigmatized at the time of referral to the hospice.

“Moving the care to where the patient is would help curb the notion that referral to a hospice is a death sentence.” Mrs. Warui said.

She said that integration would help the patients to understand that palliative and hospice care are not separate entities in a patient’s care but a process that ensures they lead a comfortable life all through their illness.

Attendees expressed concern over privacy of patients as handled by some nurses who call patients by their ailment adding that it is important for the nurse on duty to keep the patient’s disease as a private matter between a health care worker and the patient.

According to Mrs. Warui, over 80 health care providers have participated in a Continuous Medical Education (CME) that has improved their understanding of what palliative care entails.

“We chose a multidisciplinary team from various departments that included pharmacy and laboratory.” She said.

The palliative care unit in Nyeri PGH was allocated abandoned washrooms that they managed to renovate with funds from KEHPCA.

Since it started its operations in 2011, statistics at the unit indicate that 220 patients have benefited from palliative care with availability of morphine to treat the pain.

Mrs. Warui said that the unit has always collaborated with Nyeri Hospice to hasten referrals and treatment of pain.

She said the unit recently started oncology services and on the third Friday of every month, they have visiting oncologists from Kenyatta National Hospital.

Nyeri Hospice palliative care nurse Eunice Nyokabi explained in detail symptoms assessment and management in palliative care to the meeting attendants.

M/s. Nyokabi said that without knowing symptoms in life limiting illnesses you cannot be able to manage them effectively.

“As a palliative care service provider, you need to assess, plan, implement and evaluate a patient’s ailment while involving the patient and her/his relatives.” She said.

She told the health care providers to treat what is treatable so as to enhance comfort of the patient as much as possible.

M/s. Nyokabi urged the participants to embrace truth telling and avoid the conspiracy of silence when it comes to breaking bad news to patients.

“Let them know what their disease is and what their drugs are and involve relatives because if you are not infected, you are affected.” She said.

The palliative care nurse said that team work is important in the care of a patient as divisions along professional ranks will not work in favor of the patient, which is at the heart of palliative care.

The common symptoms handled during the meeting include constipation, virginal discharge, nausea and vomiting among others.

Challenges Identified

• Lack of awareness about palliative care among patients and their relatives who take referral to hospice as a death sentence.
• Shortage of staff, as not many health care providers are trained in palliative care and even those who are trained transferring to other places or changing their profession.
• Shortage of palliative care drugs still remains though the hospital has always supported in the purchase of these drugs

Solution and way forward

• All developmental partners are involved in training more healthcare providers to help fill the gap of professionals in palliative care.
• Enhancement of integration of palliative care in hospitals to enable patients start palliative care at the point of diagnosis that will enable them understand the process hence reducing the stigma attached to hospices when time comes for referral.
• Approach developmental partners, targeting the top management first so that once they embrace support for palliative care, involving the lower management would be easier rather than climbing the ladder.

The health care providers were advised not to forget themselves when it comes to health matters as they too are human beings who can be caught in the disease circle if they do not watch their nutrition.

Most nurses learn how to handle patients under medical terms and hygiene but detailed care beyond medical attention remains vague in their practice.

It is therefore important to develop a structured mentorship program such as recruiting nurses into the field and supporting their retention and advancement in the palliative care field.

Catherine Ajuoga is a Senior Nursing Officer at Nairobi Hospice and has participated in several mentorship programs.

“I have been involved in this process since 2003 when I joined Nairobi Hospice. By the virtue of working at the hospice, being the first one in the country, we have been privileged as a resource center where upcoming hospices and palliative care units have drawn, not only their training skills, but also experience in patient care.” She says.

Ajuoga says that for over two decades, Nairobi Hospice has been offering opportunity for placement and attachment for basic and post basic health care professionals.

“I have been involved in mentoring these professionals during their practical experience at the hospice.” She adds.

The Senior Nursing Officer says that mentorship is important in palliative care as it offers an opportunity for sharing and disseminating knowledge and skills.

“It ensures practices are standard across settings, making quality services available to patients at all levels. Mentorship offers an opportunity to discover strengths, weaknesses and knowledge gaps hence becoming an avenue for growth.”  She says.

The process, according to Ajuoga, entails institutional site visiting, telephone conversations or face to face meetings where by the mentee is coached, guided, supervised and demonstrated to how palliative care is carried out for the utmost comfort of the patient.

Since she became a mentor, Catherine Ajuoga has taken numerous nurses through the mentorship process in Thigio Hospice, Kimbilio Hospice, Machakos Hospice, Kenyatta National Hospital Palliative Care Unit and Garrisa Palliative Care Unit.

She intends to have the mentorship program run in exchange visits across hospices besides having joint events where nurses can exchange ideas and experiences in palliative care.

“The feedback from the mentees is satisfaction, appreciation and increased desire to participate in the process which we are looking into if resources can allow.” She says.

Dr Kinyanjui is the Education and Research Officer at Kenya Hospices and Palliative Care Association (KEHCA) and says that they are working on a project to improve the knowledge  of mentors.

According to Dr Kinyanjui, mentorship is a key area in palliative care where a palliative care nurses undertakes practice under supervision from a qualified palliative care practitioner in an established hospices after training.

In the hospice, palliative care nurses learn how to handle and interact with clients which make them more confident in handling patients in need of end of life care.

“Nyeri hospice has done a lot in mentorship of palliative care practitioners, not only to individual nurses but also acting as a mentor hospice to other hospices and palliative care units.” Dr Kinyanjui says.

The head of palliative care services at Machakos Level 5 Hospital  Mr. Elijah Musau says that mentorship in any field, palliative care included, requires a practitioner who has excelled in that field.

He says that a mentor who is experienced in provision of care, models the newly trained person to face challenges involved in provision of care with courage and boldness.

“A mentor shares the experience gained in the field, guiding and supporting the newly trained person to excel in provision of palliative care.” Mr.  Musau says.

He adds that the mentorship process can take a year or two depending on the mentor or the person to be mentored.

Through Kenya Hospices and Palliative Care Association, Mr. Musau says that Machakos palliative care unit was set up and renovated to a modern model unit. “Four officers from our facility and four from Kangundo District Hospital have undergone through mentorship.” He says.

Mr. Musau adds that after undergoing through the process, the officers are confidently engaged in palliative care provision on part time basis at the unit while those mentored from other facilities are gearing up to set up a palliative care clinic in their area of operation.

Machakos palliative care unit has its own patients’ assessment and monthly reporting tools and the head of palliative care unit says that patients have access to essential medicines used in palliative care including oral morphine.

This was said by Kangundo District Hospital Medical Superintendent Dr Joseph Thigiti during a Continuous Medical Education conducted by Kenya Hospices and Palliative Care Association at the hospital.

Dr Thigiti said that this has created a huge gap in health care provision hence becoming the most disabling part in medical care.”

“Most medical care providers walk away from patients with life threatening illnesses at a time when they are most needed.” He said.

He added that there is no time patients are in need of health care providers other than when they are terminally ill.

According to the Medical superintendent, most medical care practitioners walk away from taking care of patients with life threatening illnesses because they have no idea how to handle them, or their relatives.

He said that during this trying moment, health care workers act as if they are running away from the commitment they have been having with their patients.

“Health workers need to be empowered in palliative care, not only on how to take care of patients but also how to handle the patient’s relatives.” He added.

Though Kangundo District Hospital has had challenges of creating space for palliative care, Dr Thigiti said they have managed to allocate rooms in preparation for palliative care integration in the hospital.

The hospital, he said, is still pursuing support from its partners to renovate the rooms so that it can fully kick-start the palliative care unit.

According to the hospital nursing officer Mrs. Ruth Wambua, about ten patients are in need of palliative care at the hospital daily.

“We hope to improve end of life care to the community who have always taken our care services positively.” Mrs. Wambua said.

She said that most patients in need of palliative care are referred to Nairobi or Machakos but Mrs. Wambua hopes that the trend would change once the unit begins its operations.

The nursing officer said that the challenge they may have is staffing as she is the only one with a certificate in palliative care though she says there are nurses willing to join her in the race.

Senior Nursing Officer in charge Mrs. Susan Kithusi said that most cases in need of palliative care arise from the gynecology ward as this is where cervical cancer detection originates.

Mrs. Kithusi said that they conduct home visits around Kangundo due to financial constraints adding that they are incorporated in outreach activities organized by the Ministry of Public Health and Sanitation touching on areas they specialize in.

“It is saddening for patients to postpone treatment, especially chemotherapy, due to lack of funds.” She said.

She added that these patients turn to health care workers for help hence the need to fast track palliative care service provision at the hospital.

KEHPCA’s Education and Research Officer Dr Asaph Kinyajui said the interest the hospital staff has towards palliative care is huge saying that the association will continue capacity building them in various palliative care knowledge and skills.

Dr Kinyanjui urged them to undertake palliative care courses from institutions offering the same within and out of the country to enhance their skills for better service provision at the palliative care unit once it is renovated.

On shortage of drugs, the association’s Programs Officer Mr. David Musyoka said they are liaising with the Ministry of Medical Services and Kenya Medical Supplies Agency to have enough morphine procurement and supply to hospitals and hospices.

KEHPCA alongside its partners in the medical field is at advanced stages of having a palliative care curriculum in place for medical students taking their studies at Kenya Medical Training College.

This incorporation aims at equipping medical students with knowledge in palliative care at an early stage in their studies.

The Continuous Medical Education is one of the efforts of KEHPCA to equip health care providers in Level 5 and Level 4 hospitals across the country with palliative care skills as it strives to integrate palliative care in government hospitals.