Felt Needs of Cancer Palliative Care Professionals Working in India: A Qualitative Study

Death and grief

This includes sub-themes related to young untimely deaths, beliefs about death, paradox of death and grief reactions, which was prominently seen across all interviews [Table 2].

All the participants spoke about their challenging experiences related to death, dying and grief, specifically dealing with pediatric patients, “I cannot overcome death of patients who have not even seen life...those young patients (tearful)”; “Facing death is a challenge till date...specially when family with 6 or 5 or 4 years old children come…under 20-or 22 patients are here…to be able to see them suffer is a big challenge.”

Participants believed that suffering is bad, deaths should be sudden and without suffering, “I think such suffering should not be given to anyone”; “Why innocent people should suffer with no bad habits?”

Many of them reported mixed feelings of relief and helplessness at the same time whenever their patients passed away, “It’s really sad but at the same time we feel we have done our part for giving relief”; “After 8 hours he died….I felt good for him that he would not have to suffer now but it was so.so horrible to witness that…and I was really upset as well.”

There were range of reactions explained by the participants, which were nothing but grief, such as “I feel sad and helpless and sometimes I cry in front of my patients only… and sometimes I just can’t take it…I sit somewhere and cry”; and “I have lost my mood…I sometimes feel I am going into depression…by seeing such people everyday.”

Challenges in palliative care

This includes sub-themes related to challenges in beginning of career, challenges faced with patients and their families, challenges with seniors and colleagues, challenges faced at organizational level, and physical and mental exhaustion experienced by the participants [Table 2].

Participants shared their challenges faced with patients and their families with respect to handling poor awareness and knowledge about cancer and palliative care amongst the community. They also expressed how challenging giving psychological support, handling questions related to life and death, and spirituality is. One participant shared, “Families want us to postpone the death.those things are very challenging…they keep asking how’s the patient, how’s the patient, indirectly they want to know how much time the patient will live…every single day…same question,” while other participant said, “Their spiritual needs which I feel I can’t handle, it is so challenging when the patients come and ask such questions about life and death.”

Most reported challenges faced when they had started their careers in the field of palliative care, “I was not ready to face dying people because as a youngster we wouldn’t want to deal with death and dying...that was a huge challenge…I felt helpless…with no formal training and I felt ill equipped with knowledge and I didn’t want to do it that time.” While other participants shared that they were mostly disturbed at the start of their careers with loss of sleep and thoughts of quitting the job.

With regard to challenges faced with seniors and colleagues, participants reported not being respected and understood by different professionals within the same team. One participant reported, “sometimes we have to manage everything, especially at night time we get lot of emergency calls, no doctors or counsllor are available and so many responsibilities are there on my head, alone.”

While the other shared hierarchy issues within the same department, “Since I’m alone, I cannot always tell my problems to the doctor. They are anyways in higher level. I don’t have a colleague to share my problem. So, that’s what. So if any problem for palliative medicine, I have to run around. No support.”

At organizational level there were challenges experienced such as income earned per month, infrastructure, respect for the profession, workload, and scarcity of employed professionals. Few quotes from the transcripts - “Pay wise, space wise, respect wise, we have fought with the management and even the government since beginning…its unfair for the amount of work we do and that is not even considered…so that causes frustration…they say that palliative is not an important area and we should not be so demanding”; “We don’t have social workers or counselors as a regular team member and we can only make referrals, it increases my stress levels as I have to manage everything alone.” One participant mentioned how other departments look down upon palliative care, “Other departments call us ’angels of death’, the minute they see us, they are scared that some patient might die or something like that referral has been made.”

Many of them were experiencing physical and mental exhaustion reportedly as a result of their workload at workplace, which they described using terms such as tiredness, giddiness, exhaustion, irritability, and no personal time. One professional looked disturbed while explaining her duties and how it leaves her with no time, “I don’t have any free time…I have to study for my course, do my household work, then duty here whole day…no time is left to think about myself.” Another person mentioned “I do generally get mentally exhausted and there are really tough days when I become irritable easily on anybody…I drink lots of coffee and don’t want to exercise towards the end of the day. I want to just go home and sleep.”

Strategies for self-care

This includes sub-themes related to personal strategies, social strategies, and religious/spiritual strategies used by professionals as part of their self-care [Table 2].

Professionals were asked what different types of helpful self-care strategies they indulge in on a regular basis, to which some described using personal strategies such as playing with kids, spending time at home, distracting from workplace and detachment from their feelings. “Once I go home, I will not totally forget about patients, I will think of some other instances, and suddenly will try to come out of it by being busy in housework.”

Some expressed social support from colleagues and seniors was helpful as one participant shared, “I share with my friends, my colleagues…with them I try to discuss it so as to how to overcome it, if necessary I call up my seniors who are retired now and see what best way I can get out of my emotions to self-counsel myself…self-reflection on my practices also helps”; another participant said, “My colleagues are very supportive and cooperative. If I am sad, they are always around to help me out.”

And many reportedly engage in prayers and retreats on a regular basis, for example, “My religion has given me moral support…I think there is some power in it…some positive power and energy. And I have adapted dhyana and meditation too in my routine, I think it helps me to accept and let go.”; and “Prayer helps me a lot…I have fellow colleagues who have the same faith and we pray together as a team…we remember our patients after coming to department from rounds and pray for them.”

Positive professional experiences

This includes sub-themes related to professional satisfaction, service to humanity, and perceived changes in self [Table 2] after joining work as a cancer palliative care professional.

The interview data were not limited to challenges or difficulties, participants also expressed how they have changed over time because of their profession with inculcation of acceptance, courage and compassion for others. Few excerpts shared are, “It has made me little stronger…now I feel it’s a part of life and you need to move on…it takes time but acceptance has come;” “I have more courage now and I have started appreciating life more than before”.; and “I think we are much more compassionate now… we have become more caring.”

Some participants shared positive experiences while helping others and called it a “noble service” and “service to humanity.” Majority mentioned the satisfaction their job provided, example, “I feel satisfied at the end of it…when I do this I feel satisfied…and feel a kind of happiness…I feel some kind of worth...regarding what I am doing.” A few participants also shared how positive feedback from their patients and their families is reassuring and motivating. One participant shared, “When my patients and my superiors thank me and appreciate me that I am working well, that gives me so much motivation.” They also described their job as a service to mankind, “Serving the people, who are suffering, is a great service in itself;” and “My job is to help other people. I am happy to work for them and I feel it’s God’s work and we should help people.”

Vision for palliative care

This includes sub-themes related to professional attributes required for being palliative care professional, future expectations from the field, and training and supervision related aspects [Table 2]. As per the participants, one needs to be equipped well and be aware about the field of palliative care before their joining. For example, one participant shared “One needs to mentally prepare first and then come here,” other participant said, “Emotional involvement in work is required.” while another one felt without compassion one couldn’t survive, “Passion, training, commitment, and faithfulness is required to be in this job. Without compassionate touch you can’t survive.”

There were expectations related to increase in workforce, more facilities for relaxation at workplace and more hospice to be set up in the country. “More hospices need to come up or at least palliative care services to be made available for the public”; “More staff, more equipment, more social workers and trained counselors are required here. And we need more extracurricular activities for the staff here.”

Majority strongly expressed how training and supervision was important to be able deal with the unique challenges of palliative care. For example, “To witness wounds, deaths and handle all these…a proper training is required…palliative care is a difficult job;”

“We need to have palliative care training and only then you can provide exact training to the trainers. There are not many trained physicians or nurses in palliative care in India…so you can imagine the quality of existing training courses.”