Nurses play a significant role in hospice/palliative care. In addition to the conventional nursing duties of observing and recording symptoms and treatments, they also provide emotional support to terminally ill patients and their families, through a series of roles.
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.
A nurse’s challenges
Palliative care is concerned with quality of life rather than quantity of life. Many patients do not have an opportunity to access formal hospice services because they live in remote areas or they are in a care environment that cannot draw on expertise from local palliative care providers. This leaves a nurse with an option of looking for means to look for means to reach where the patient is.
Breaking bad news of long term illness to a patient and family members due to the anticipated causing of anxiety and depression to both the patient and the family scares many nurses. Sometimes these issues affect them emotionally and psychologically.
In the health facilities, there is conspiracy of silence and by the time the patient is referred for hospice care, they are not aware of their diagnosis and prognosis. The nurse in palliative care is expected to do the breaking of bad news, something expected of a doctor or nurse who had the first contact with patient after diagnosis.
Addressing the financial constraints due to the expensive medication involved with patient’s long term illness e.g. surgery, chemotherapy and radiotherapy. Nurses also face a challenge in helping the family cope with anticipated loss after loss/grieve especially to young children of the affected client.
There occurs a change in focus from cure to care and subsequent alteration in patient goals. Facing the reality of death is a traumatic experience for a patient and their family members. It can also be a traumatic time for nurses without the necessary knowledge to assess, plan, evaluate and advocate to their patients.
Cultural factors and beliefs about palliative care, terminal illness and handling of death and issues surrounding it pose as a challenge. Preparing people for death is a challenge since in the African culture, it’s viewed as a taboo to speak about death. This requires a lot of braveness and more knowledge on how to go about it.
Relatives have challenges in end of life care forcing us to train them and occasionally when visiting we find new members who may have no understanding on the patient prescription. This may lead to inconsistency of drug administration to patients. Some family members lack cooperation in provision of home based care.
Lack of palliative care knowledge by other health care professional where in some cases, patients are admitted for respite care but there is failure to give drugs as prescribed, e.g. Morphine.
Late diagnosis and referrals to hospice also proves as a challenge.
Curbing the challenges
Vigorous awareness of palliative care services so that it’s not a new concept in the health sector and in the community to ease addressing the issue and creating awareness on cancer and early screening.
Team approach through more trainings and interactions with palliative care workers to share experiences in seminars would help in achieving the ‘active total care of patients whose disease is not responsive to curative treatment.’
Provision of Continuous Medical Education sessions (CMEs) to practitioners on the use of opioids to control pain would equip nurses with knowledge and alleviate myths associated with morphine use that limits its use.
Timely referral could give a family satisfaction, improve their coping mechanism and impart adequate knowledge on palliative care giving a nurse motivation in his/her work.
Previously nurses were viewed as lacking qualification to prescribe morphine due to fear of abuse by over dosing and the phobia of prescription of such drugs restricted by the dangerous drug act (DDA). Lately things have changed and nurses are knowledgeable enough to comfortably prescribe morphine.
Trusting nurses with morphine prescriptions especially with the continued trainings on the use of opioids and management of pain. They have knowledge on the use of strong of opioids and at what level of pain morphine can be administered using the World Health Organisation analgesic ladder. Patient’s comfort especially with proper pain control gives a palliative care nurse satisfaction.
Debriefing among palliative care nurses could help lessen their burnout and be able to continue providing end of life care.
Motivating palliative care nurses through seminars and visiting other hospices to learn new approaches to end-of-life care. Feedback from patients and relatives also gives palliative care nurse motivation to continue offering palliative care services.
Improving a nurse’s role in palliative care
Raising the profile of end-of-life care and working with local communities to increase awareness of the same will give a palliative care nurse ease time in giving services to patients.
Strategic commissioning involving all relevant provider organizations and assessing how any planned changes to service delivery would affect their quality of service delivery.
Identifying people approaching end-of-life by training health care professionals on how to identify such patients as well as improving their communication skills.
Care planning where people approaching their end-of-life have their needs assessed, their wishes and preferences discussed and an agreed set of actions recorded in a care plan.
Coordination of care which includes establishing a central coordinating facility as a single point of access through which services can be coordinated, as well as registers of people approaching end-of-life so that they can receive priority care.
Have rapid access to care, with health care, personal care and caregivers’ support services available in the community 24 hours a day, 7 days a week.
Delivery of high quality services in all settings, including hospitals, the community, hospices, care homes, shelters and extra-care housing and ambulance services during the last days of life and death.
Involving and supporting caregivers, with recommendation for the family, including children, close friends and family caregivers to be closely involved in decision-making and to have all the information they require.
Learning to deal with their own loss & grief and coming in touch with their spiritual selves will help nurses continue to survive and thrive in end-of-life care provision.
Education and training, with a recommendation to embed end-of-life care in training curricula at all levels and for all staff in health care.
Measurement of end-of-life care through research, which should look into the structure, process and outcome of nurse’s role in palliative care.
Among KEHPCA’s efforts
Kenya Hospices and Palliative Care Association (KEHPCA) is set to start the second phase of the Waterloo project this year beginning from May. The True Colours Trust had graciously funded this phase of the project which will focus on strengthening the 11 government hospitals in phase one to be centres of excellence in service delivery, training and mentorship to increase the quality of palliative care that patients receive.
It is KEHPCA’s hope that the outcome of this will be that palliative care is fully embedded in 11 Level 5 and provincial government hospitals to enable them to provide high-quality palliative care and pain management to patients with life threatening illness regardless of their age, race, ethnicity, gender and economic status.
The Kenya Medical Training College (KMTC) project to start a Higher Diploma Course in palliative care is on schedule and will take the first students in September 2013.
KEHPCA has also conducted several Continued Medical Education sessions (CMEs) since January. Some of the institutions that have received education are Nkubu and Kyeni-Level 4 Hospitals in Eastern Province; Kalamba Dispensary; Moi Teaching and Referral Hospital in Eldoret and Nyeri Provincial Hospital.
“We need to continue working hard and advocating for palliative care at all levels of care.” KEHPCA’s Executive Dr Zipporah Ali says.
Nyeri Hospice: Mercy Njau; Nursing Officer, Mercy Owiti; Nursing Officer, Esther Kahuthu; Nursing Officer and Eunice Ndiritu; Nursing Office.
Thika Hospice Foundation: Dorcas Kabugo; Volunteer Nurse.
Laikipia Palliative Care Centre: Elmelda Oirere; Nurse In-Charge and Lucy Maina; Volunteer Nurse.
Kenya Hospices and Palliative care Association: Dr Zipporah Ali; Executive Director.