My learnings from Palliative Care – a series: Superheroes without capes

Pouruchisti Wadia is Associate Program Director, Romila Palliative Care at SNEHA

One of the commonly reiterated facts about palliative care is that it is provided by a multi-disciplinary team. This blog is dedicated to nurses, the most pivotal cog in this team and more specifically to the three dedicated home care nurses of Romila Palliative Care.

Interestingly, the modern Hospice movement founder Dame Cicely Saunders also began as a nurse, then a medical social worker and then went on to become a doctor [1]. In her brother’s biography [2] of her, he described how – she felt that because of her unusually wide experience as a nurse and medical social worker she was well equipped to make care for the terminally ill much better. She was advised by Mr “Pasty” Barratt, a leading Harley Street surgeon with whom she worked, ‘Well, you’ve got good ideas, but you won’t get anywhere unless you become a doctor. It’s the doctors who desert the dying’.

My guess is that even today if you ask nurses why they choose nursing as a career, most will talk about their need to serve, help etc. But some years later after joining the medical team in a large or small medical institution, they get lost in the daily grind of changing the bedsheets and giving sponge baths to disgruntled patients at 5 am, in a hurry to finish before their duty ends. Often they do not even look at the patients while routinely checking their vitals and neither do the caregivers give them adequate attention, despite the critical role they play. 

In spite of everything, some of them manage to develop deep relationships and care for their patients and their families. They definitely spend more time with the patients than the doctors who breeze in and out. I remember years ago while sensitising nurses of large public hospitals on gender-based violence (at SNEHA), we would discuss how the patients would be more likely to open up with them and share their stories. The simple logic is based on the comparatively extra amount of time they spend with the patients. 

Enough digression here however, I want to share more about palliative care nurses. Usually, there is a hierarchy where the nurse has to unfailingly follow the instructions of the doctors. In palliative care, they work as a team. Nurses are usually the first point of contact. Many palliative care programmes are nurse-driven, where the nurses are key decision-makers. The doctors of course require to give the prescriptions etc. but the nurses monitor the patients’ overall well-being and keep the doctors posted.

With the large unmet need for palliative care, it becomes pertinent and probably easier to appoint more nurses along with sensitising and convincing more doctors to get involved in the field of palliative care. It’s important to reiterate here, however, that the principles of palliative care can be applied by medical teams in whatever practice they are engaged in.

Another key distinguishing factor with regard to palliative care nurses is that rather than just doing the nursing procedures like dressing the wound and bedsore management themselves, they teach the caregivers how to do it. Their role is to increase the confidence of the caregiver in looking after the patient and thus improve the overall quality of life. This also helps avoid the expense of appointing a paid nurse while ensuring that the palliative care team which does free service, is not burdened beyond their capacity.

To elaborate a little more on their distinguishing role, while the “team” which I keep talking about includes counsellors and social workers, often the nurses, almost always end up playing multiple roles. Every team member sees the patient as a whole and while they do divide their roles based on their expertise, the nurses do the maximum multitasking.

At Romila Palliative Care, where the team is quite small, the nurse is the face of the centre for many of the patients. Nurses, first encourage the caregivers to register with us and then slowly become like a friend of the family. I know I am not far off when I can say confidently that listening is a skill they use as much as their technical expertise. They patiently explain medication and ensure the patients’ compliance by first understanding their hesitations. When they conduct end-of-life visits, it is the nurses who talk to the caregivers about the activities to be done with a terminally ill loved one[3] as part of our objective of ensuring a peaceful death for the patient.

We have had nurses connect with the patients on food choices and other common interests. Caregivers sometimes quietly share or ask their queries to a nurse when they feel it may be too trivial to ask the doctor, in spite of the doctor’s repeated assurances to the contrary.

Palliative care nurses, also have one important distinction which can be seen as an advantage but also has its pitfalls. They bond very well with their patients and caregivers and can openly demonstrate their feelings with them. However, this can be emotionally draining as well and they constantly have to learn to strike the right balance. Like counsellors, they too have to consciously find ways to de-stress and the organisation has a responsibility to ensure that they do not burn out. Regular team meetings also help.

Wound dressing which is an important part of nursing care goes to an entirely different level when it comes to palliative care patients. Often cancer patients have very deep wounds, which emit a very foul smell. The nurse’s role is to teach the family how to dress the wound, with a constant smile on her face, consciously making sure that her face does not give her away. There are times when these wounds even have maggots in them. Not only do they have to remove them but the nurses have to teach the family members how to treat and prevent maggot infestation in the future. We had one patient, whose only caregiver was a minor daughter who found it extremely difficult to accept this responsibility. Our nurse definitely did not have an enviable role here, especially considering she had complete empathy for this young girl too.

Besides all these challenging roles, the nurses also teach the caregivers how to feed the patient through a peg or a ryles tube, catheter care, stoma care, giving enema’s, etc. Nonetheless, they have often reported how fulfilling their job is and how making a difference in the patient’s life makes it all so worth it.

 A grand salute to all the nurses out there doing a wonderful job!

[1] During the war, she decided to become a nurse and trained at Nightingale School of Nursing based at St Thomas's Hospital from 1940–44.[5] Returning to St Anne's College after a back injury in 1944, she took a St Thomas's Hospital Medical School (now merged to form King's College London GKT School of Medical Education) and qualified MBBS in 1957

[2] Dame Cicely Saunders: A Brother’s Story

[3] www.hrrv.org/blog/5-activities-to-do-with-a-terminally-ill-loved-one/