One might question the implementation of rehabilitation strategies like physiotherapy in a setting like palliative medicine where chances of full recovery are next to none.
However, if we remember the ethos of palliative care, the affirmation that quality of life takes a first place, palliative physiotherapy becomes not only logical, but necessary. Rehabilitation goals can take the form either of preventive, restorative, supportive and palliative.
Physiotherapy aims to optimise the patient’s level of physical function and takes into account the interplay between physical, psychological, social and vocational domains of function. Its focus is on physical and functional aspects of the disease and its treatment, but also on helping the patient gain control over their situation.
It helps the patient to take active role in decision making and to see how their behavior or functional routines can take away troublesome symptoms. Dr Sneha Rooh, palliative physician and interventional pain specialist from Hyderabad, India , caught up with Dr Ashok, a physiotherapist at MNJ Institute of Oncology and Pain Relief And Palliative Care Society (PRPCS) in Hyderabad.
Hello Dr Ashok, thank you for speaking to us about this important topic. For how long have you been working in the Department of Palliative Care and what is your role there?
I have been with PRPCS for one and a half years. I take care of the out-patient department (OPD), hospice, home care and community services of the institution. It is really satisfying to me; I get to play a role in relieving people’s pain and easing their symptoms.
The pain is acute sometimes. For example, if the patient is feeling weak for a few days and has been in bed, has developed cramps and pain is acute, or there may be are metastatic bone pains in complicated cases.
We work with people who are bed bound even if they don’t have overt problems to prevent them from developing contractures and to prevent wasting of muscles. Sometimes even moving the person outside the bed on a wheelchair to the garden to bask in the sun is deeply therapeutic.
You have undergone training for about four and a half years and must have seen a huge number of cases, how is providing physiotherapy in palliative care department different from say, working in orthopedics or other branches?
Yes, I have seen a whole variety of patients, from pain management, frozen shoulders, rehabilitation after an accident, and many more. I would say what I noticed in the Department of Palliative Medicine is the patient doesn’t – we don’t either – feel that only pain is the focus.
It is not as if, we talk about pain, they take medicines and go away. Rather, I feel that I know so much about the person. I know what bothers him, I know about his family, even in OPD, at the hospice, I’m extremely close to the patient. I am with him in this important time in his life. In home care, there is a close bond formed with his family. I am seeing a part of his life and history; it is very, very different.
There is a sense that I am sharing full of me and am accepting all of him. It’s just different.
Thank you for being so open about this. What are the challenges you face as a physiotherapist in patients who are in the palliative medicine department?
Most of the time there is no obvious problems, since we work as a team and they take the role of movement as seriously as they take consuming medicines, but sometimes we do get people who don’t see the need to make a few movements when they are anyway going to die in a few days or months. Then we give them time, listen to them and explain the benefit, mostly they understand after they are helped with coming to terms with their feelings.
Can you take us through few of non-electrical methods used in physiotherapy please doctor?
Sure, we use mostly non-electrical methods here in this department. Let me start by talking about therapeutic exercise: this prevents dysfunction and develops, improves, restores and maintains strength, cardiovascular fitness, mobility, flexibility, co-ordination and relaxation.
These can take the form of passive movements – this is achieved through application of external force by the physiotherapist, but plays an important role in increasing the range of joint movements, facilitating proprioceptive feedback and preventing contractures.
Then there are active assisted exercise, active exercise and gait training. Positioning is important too, more in the case of people with breathing difficulties and those who are at the risk of developing bed sores.
Can you please tell us what happens when a patient is immobile? Why is so much importance placed on movement?
I am glad you asked, we often think that lying down does not cause any harm and that a person is entitled to ‘rest’ with such grave illness and at this stage in life, but this causes multiple problems. For example within 10 days of immobilisation, bone loss and hypercalcemia can result, leading to pathological fractures.
Muscle atrophy and joint contractures that occur due to changes in connective tissue are something we work on every day. There are also associated circulatory and respiratory function changes.
Can you talk about the multi-disciplinary team approach in palliative care please? Does it make your work easier or harder, and if so, how?
Palliative care requires a multi-disciplinary team. Only then is it real palliative care addressing physical, emotional, social and spiritual needs of the patient and family. What a patient tells me might be very different from what he shares with the doctor, or social worker. We enable multiple levels of communication and multiple avenues. This way we all know about all aspects of the patients. While we have distinct role definitions, we find that we often give suggestions and feedback to our team. There is always more input. Always, I feel it to be of great help for my work.
Has your perspective on and approach towards life or death changed after working in this department?
You won’t find any person unchanged after working in palliative medicine. As a teenager, I would avoid homes where death has occurred in my town, because I didn’t know what to do. I’d go and visit the family only when I feel they have ‘forgotten’ about it – or so I thought. As a child I was too scared of death, but after working here, it wasn’t a dramatic shift but slowly over time my fear came down and even sadness came down. The first few deaths at the hospice were difficult for me.
Yes, this is another thing people who want to get into the field worry about, what happens to the carer? How do you cope seeing death up close every day?
I can talk only for myself. I started drawing lines between work and post work time. When I am with my patients I am with them , then I after work, am with my friend , family and even with colleagues. We try not to discuss cases outside the hospitals. It takes practice but is possible. During the training in palliative care we are trained in what is called ‘self-care’ and it is easier and more important than it seems.
Each of us have our own ways of coping, but the fear that one will be constantly devastated is invalid in my view, with proper training and a good team, this field can be deeply satisfying.
Is there any patient you remember often or someone who has left a lasting impact on you?
Yes, there was this girl of 12 years called Anusha, we had developed an extremely good rapport and would play often. I was on leave and on returning found out that she was not there anymore, that’s when I felt the reality of her diagnosis, while I seemed to know all the while that she was very ill, somehow in my mind she wasn’t going to die. I was very angry, even at her and had decided that I will never get myself to be this close to any other patient. I think I did put more boundaries after Anusha’s death.
What would you say to the young graduates in your field?
I would strongly urge them to do an internship in palliative care to see if this is what they would like. One has to try before one decides. If nothing else, at least it will be a valuable experience. Palliative care is an upcoming branch and deeply satisfying.
About the interviewer: Dr Sneha Rooh is a palliative physician and interventional pain specialist from Hyderabad, India. She is working on “what constitutes a Good Death according to the terminally ill” and “Needs and concerns of people in LGBTQIA community at the end of life”. Read more about her work in this ehospice article.