Reflections from a palliative care volunteer counsellor

– Ms. Madhu Juneja, New Delhi

Context: This article is based on my personal experiences while working with patients and their families in a hospital setting, as both, a mental health volunteer counsellor and a palliative care volunteer. I feel that this role provides me with a unique position as I am a trained Mental Health Volunteer Counsellor who is now also able to provide palliative care support to cancer patient families.

Volunteerism was something that I was “meant to do.” My earliest memories are of me extending or offering myself to help someone. This drove me to become a ‘volunteer counsellor’ 25 years ago; and my own cancer journey 6 years ago, got me involved in palliative care.

This journey comes with its own set of challenges; yet, I have chosen to remain a volunteer, in both areas.

This article will focus on volunteering in Palliative Care, which I feel has significantly higher emotional and physical challenges for a Volunteer. I too therefore resonate with Ann Richardson, when she says “We may not change the outcome, but, we can affect the journey”.

Being a volunteer counsellor in palliative care, I found it relatively easy to connect with palliative care patients and their families. My presence in these settings was seen as ‘less intrusive’ and ‘more welcoming’. The fact that I was not a paid staff in a “white coat or uniform” and was myself a “Cancer survivor” made the connection more informal. Today’s modern healthcare delivery, is characterised with ‘Doctor-patient relationships focussing more on medical issues and diagnostics and less on emotional issues’. This means that the counsellors / volunteers / formal and informal caregivers primarily cater to this need, as families rarely take the support of professional counsellors while caring for their loved one. This critical vacuum is often filled by volunteers which often extends beyond the walls of the hospital and right until bereavement care. On several occasions, families invariably reach out to us, volunteers, as we are now “their trusted friend”.

This however does also lead to a lot of emotional unbundling from families or patients, which they would hesitate to do with professional medical practitioners.

While I do feel privileged working with these patients and their families, it also has its set of challenges. Meeting patients in the wards, and the family thereafter, usually involve heavy conversations as these conversations revolve around ‘pain’, ‘loss’, and ‘death’. At times, volunteers tend to empathise with family members which causes a lot of anxiety and mental stress. Certain situations have also challenged my abilities to handle the emotional storms that surface within me while I see their pain, or when I see the high expectations that families place on me to “somehow sort things out” for them. Burn out does occur at times, along with a feeling of ‘Self doubt’ also creeping in when one is unable to detach effectively or accurately comprehend the loss a family is experiencing. All of these experiences were something that I did not experience and that too with such intensity, during my journey in Mental Health counselling.

While I cherish working in this domain, I do also face a few physical challenges as listed below:

  1. Volunteers, in general do encounter a fair bit of Physical challenges while performing their duties. These may include being expected to work out some modalities by oneself such as either finding transport to reach the hospital, or having a designated work area (as a volunteer is not permanent staff). It could also mean trying to find a physical identity in an otherwise official set up. These challenges are several times just a “part of the job”. Improvisation is the key in such cases. We make friends at the workplace and use their facilities if needed. Informal “identity” will always be accorded if we do a good job.
     
  2. Training and development initiatives are often self-initiated, when one is a volunteer. The ‘formal staff’ receive support through CME’s, training, and access to learning conferences. A conference trip provides opportunities for both professional growth and a leisure break; an option usually unavailable to volunteers. This indifference may be due to the perception that most questions that patients ask revolve around the do’s and don’ts during their course of treatment. This difference may at times result in volunteers experiencing reduced feelings of ‘belongingness’, and in creating a knowledge gap for a “not-so-trained volunteer”, which ultimately leads to feelings of inadequacy. In my case, I handle the above challenges by being mostly self-taught and draw from my own experiences while I was a patient. I do also spend a lot of time talking to my doctor friends to clarify my queries and reduce my knowledge gap.
     
  3. A volunteer will also experience emotional storms, compassion fatigue, grief, exhaustion from being overworked, physical ailments etc. as families often intrude (via Phone calls, messages) on one’s “me time” and beyond official hours.

To be able to function effectively, one must therefore protect and ensure one’s own safety and health (physical, mental and emotional).

I list below, a few of my practices, which helps me to ensure my safety and good health:

  1. Take regular time off, breaks, and engage in daily de stressing activities. My passion is to water flowers in the morning, and to go for evening walks which allows me to spend time chatting with my friends.
     
  2. Sometimes when I am overwhelmed, I do unbundle with my unsuspecting family members. This sharing in a safe space keeps me safe (mentally and emotionally), as my family understands what I am going through.
     
  3. If needed, I do not hesitate to take professional help from my fellow colleagues.
     
  4. Setting up and being aware of professional boundaries, as it is easy to get sucked into a spiral of belief that ‘I am a counsellor, I need to always be there for my patients and their families’.
     
  5. Remember ‘Conscientious service’. In the words of The Mother, Sri Aurbindo society, “Everyone has a role to play, a mission to fulfil and a place which we alone can occupy”

Despite the challenges listed above, I find my role of being a volunteer counsellor in palliative care to be extremely fulfilling and humbling! It has provided me with the opportunity to appreciate team spirit and form “connections” with a larger fraternity of families, doctors, nurses and social workers. I realise that we have the opportunity to support the clinicians by giving them the much needed time to focus on the patient’s physical component, while we take care of the emotional component of a patient and also their family. All of this adds to my wellbeing as I feel that I am a valued member of the larger palliative care community.

About the Author: Ms Madhu Juneja is a Mental Health Volunteer Counsellor with Sanjivini Society for Mental Health for over 20 years now. Additionally, she also volunteers with Max Healthcare.

Over time, Ms Juneja has undergone palliative care training by IAPC and Pallium India, to build her skills in the field.

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