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AN EXPLORATION OF DOCTORS’ EXPERIENCES OF CARING FOR PALLIATIVE PATIENTS AND WHETHER THEY FEEL THERE IS A NEED FOR FURTHER TRAINING AT UNDERGRADUATE LEVEL 4th National Palliative Care Conference Palliative Care is Everyone‘s Business 13th Nov 2014 Zipporah Ali, MD, MPH, DipPallCare, HonDUniv
[email protected] www.kehpca.org
SUMMARY This study explored post qualification doctors’ experiences in taking care of palliative patients and whether they feel there is a need for further training at undergraduate level. • Explored Participants’ – understanding of palliative care, – their experiences and challenges – received any training in palliative care as medical students – and whether or not they felt there is a need to include palliative care in undergraduate medical training
Demographic Characters
Study methodology • • • •
qualitative (phenomenological approach) In-depth interviews Sample size 7 (saturation) Participants were from Medical & Surgical wards in KNH –post grad students
PARTICIPANT (INTERVIEWEE)
SEX
1
Male
30
2
Surgery
2
Female
28
3
medicine
3
Female
31
3
medicine
4
Male
29
2
medicine
5
Female
31
2
medicine
6
Male
32
3
medicine
7
Female
31
3
Medicine
AGE
YEARS OF SERVICE POST QUALIFICATION
DEPARTMENT
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Types of patients the respondents were taking care
• The respondents indicated that they took care of patients with different types of •
terminal illnesses, but majority were patients’ with advanced cancers. They also encountered patients with chronic conditions like: • dementia; • advanced diabetes; • hypertension and its complications; • stroke; t k heart h t ffailure; il • HIV/AIDS and also patients with both cancer and HIV/AIDS.
Findings (Main themes arising from the data analysis)
Generally, had all taken care of patients with palliative care needs as well as patients who had treatable diseases like malaria, pneumonia among others.
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Understanding of palliative care/ end of life care
• There was a general understanding that is was care given to patients with diseases that were not curable and that controlling patients’ pain and counseling was important. • Phrases like comfort; counseling; spiritual care; conventional, supportive care, specialized care, relieving pain/suffering; given to patients with a terminal illness were used in trying to define palliative care. •
Palliative care means supporting a patient who has a terminal illness. It means mainly support if they have pain; and they are counseled adequately especially and depending on the care they need before death (R3).
•
Palliative care is care given to people who have a life limiting illness or a terminal illness which means that anything further done is not done to cure them or to prolong their life but rather to improve the quality of their life; make them comfortable and give them a dignified end to their life (R4).
• •
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End of Life Care • End of life care is generally taking care of people who have a terminal illness; who probably are on their way out; so it’s about care and making them comfortable so that the remaining days they are able to….what I understand is “adding not just days into their lives but life into their days”. It’s about adding the quality of their lives in their terminal illness (R1).
..so it does not involve making them cured; it just means making them comfortable; managing them in terms of nutrition etc (R5).
Managing patients’ nutrition and giving patients a dignified death also came up as part of palliative care.
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Care provided • Clinical Care‐ This was expressed mainly as pain and symptom management and infection control. Other aspects of care (counseling; spiritual care) were mentioned as necessary spiritual care) were mentioned as necessary but provided mostly by ‘those other people’, meaning counselors and at times nurses.
Empathy Empathy was mentioned several times by some of the participants. Some said they empathized with these patients and did not wish to be in their situation. • … It makes me empathize with the patient and of course it makes me want to make the diagnosis early if possible. As doctors, medical ethics compels us to be emphatic and not sympathetic but in spite of this, man is human in every aspect.
Experinces Depressing and avoiding • ‘I do feel depressed at times and there is a strong avoidance reaction to these patients to be to be very honest; you just really avoid those situations; you don’t really have the resources to deal with them; you are doing your work; your ward is packed to the rafters with people; so really I don’t have the physical and emotional resources to deal with them. (R2)
Psychological care • The issue of counseling came up with all participants. Most observed that this was not easy for them; they had not been taught how to counsel patients or relatives; they did not have enough time; and they also thought this should be left to the trained counselors or nurses. • One participant used the word ‘pathetic’ to express the situation about doctors counseling patients. They accepted it ti b td t li ti t Th t d that they were not good at counseling patients or relatives. “There is need to train especially undergraduates coz they are pathetic at counseling; and you know, I don’t know whether it’s the patience that people don’t have; is it the time or the know how; doctors are not good at counseling” (R1).
Counseling was generally perceived as part of palliative care but not seen as a doctor’s role.
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Communicating bad news/ breaking bad news •
‘You see, as young doctors we struggle with the frustration of not having certain answers…..how do I reveal fatal diagnosis to a Patient and their family? How do I act when I am around such patient or their family of a dying patient? How to support give support to such patient? It’s really nobody’s fault, it is difficult enough to treat patients who are severely ill but still have the hope of recovery’
•
‘…and telling the truth and especially if the diagnosis is a bad one, we will try to avoid it as much as possible and we may give even false hopes; we don’t tell the ; ( ) truth; we circumvent around the truth and…’(R5)
•
Talking about bad news, all participants mentioned that they had gone through the experience of telling a patient and / or their family member a bad diagnosis and that it was not an easy or pleasant thing to do. The fear of not knowing what to tell a patient was given as one reason why they did not want to communicate bad news.
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Spiritual care •
(Laughter)…,Spiritual care? in this hospital we don’t really give spiritual care because if we find the patient is depressed or lacking motivation, we call the counselors to come or the social workers to come and speak to them; there is a priest who comes but us we don’t actually give spiritual care although we should (R2)
• One participant strongly felt that it was not the role of the doctor to provide spiritual care. They felt a spiritual person was better placed to give spiritual care, especially as this person would be able to address the various spiritual needs of patient
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Challenges • • • • • •
Time Supervision Pain management Teamwork Referral systems M th Myths and beliefs surrounding terminal illnesses d b li f di t i l ill
Training received in PC • They came; well, I remember that was way back in 2010….to be honest, it was very interesting; palliative care; and it made a lot of sense and I think during the lecture there was a paradigm on pain management and all those…it was g( ) interesting (R3). • I have no memory of having been taught how to handle palliative care patients; I have just attended one conference by Nairobi Hospice where a certain Dr X I remember as a 5th year, it was one afternoon; how to talk to patients… I can’t actually remember what (R2)
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Training needs • • • • • • •
The training needs were identified as: Counseling Spiritual support Communication and breaking bad news Pain management Symptom management
Conclusions • • • •
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Participants in this study displayed an understating of the wider concept of palliative care Acknowledged that PC was important That medical students should receive training and supervision in PC Participants found palliative care challenging and felt they did not have enough knowledge and skills to provide good quality palliative care and g g p g q yp that palliative care should be included in the training of undergraduate medical students. Despite the fact that they had not received adequate training and skills in palliative care, this did not stop them from trying to offer some aspect of care to patients. The need for palliative care knowledge, good teamwork, supervision and good referral systems were emphasized as key in providing palliative care.
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Reccomendations • Emphasis should be given to palliative care in undergraduate medical schools training. In order for doctors to serve patients adequately and appropriately, they must understand all aspects of medicine, including palliative care. • Palliative care should not been seen as an isolated service, but Palliative care should not been seen as an isolated service but an integral part of health care services. • This study therefore recommends that: Palliative care should be integrated into undergraduate medical curriculum so that every graduating doctor understands the basic principles of palliative care and can apply the knowledge and skills learnt to their patients in whatever set up they are working in.
Recommendations….. • •
The effectiveness of undergraduate education should be enhanced by practical experience, mentorship and supervision. Training should focus on the training needs that emerged in the study. These are: – – – – –
• • •
Counseling Spiritual support Communication and breaking bad news Pain management Symptom management
Systems for supervision and mentorship should be encouraged Better referral system should be put in place so that doctors know where and when to refer and patients do not suffer. Further research could look into other ways of acquiring palliative care competencies and models of training.
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• Thank you.
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