Lessons from palliative care towards better mental health in communities.

Death, most often, is labeled as our toughest enemy but ask anyone suffering with a chronic or terminal illness and they will tell you otherwise. I guess this is where the concept of palliative care would have first come in. Providing care to someone in entirety — body, mind and spirit, while treating disease as something natural and personal.

Walking through a hospice center changes something very fundamental in you. The subtext reads, “Healing starts with compassion and compassion begins at empathy.” In retrospect, it doesn’t seem that rare a lesson in healthcare but spend enough time at a hospital and you will relate health with a flood of data, crash carts, assaults on human dignity and a violent rush. I guess that rush has a reason, I guess there are spaces where human life is at a higher value than human dignity. So even though most domains in medicine may not find asylum in preachings of a hospice, the sector for mental health can certainly benefit from it.

In the struggle with inevitability and irresoluteness, mental health patients are often aggrieved with the fear of outcome rather than the outcome itself. Perhaps this is how, care for them can be made better.

  1. Respect dignity: A life lived should be a life lived with self worth. In most cases of neurodegenerative disorders and behavioral dysfunctions, the first loss is that of a definition of one’s own self. Mental wellness cannot be ensured unless this definition is restored and that should be our biggest aspiration.
  2. Find who does the person want to receive care from: Every health mission at community level has ensured delivery of healthcare through local groups. In maternal and palliative care (which represent the two most common phenomena — birth and death) the rein of wellness has been completely given to local communities and we need to do the same in mental health. Trust with intimacy is a strong antidote to almost everything.
  3. Respect personal interpretation of the disease: The fear of dying is worse than death. Our interpretation for suffering, may it be spiritual or guided with logic is a huge determinant in how and where healing begins. This makes it even more important for caregivers to understand and respect this interpretation of one’s own medical condition and how one expects it to progress.
  4. Avoid solitude: Let’s create communities around health, with each one being able to closely see the other’s suffering. It at first will seem redundant (maybe even harmful) to subject an individual, struggling with his/her own mental health issues, to someone else’s suffering. To take an entire community out of its protected environment and put them alongside infectious sorrow does sound illogical, but healing begins and compassion and compassion at empathy.
  5. Create space: We need physical, emotional and spiritual spaces where one’s ailment doesn’t matter. For patient’s with dementia let us design spaces where disorientation doesn’t mean disarray; for patient’s with mood disorders let us design spaces with calming sensorial experiences. Creating physical spaces that are agnostic to mental ‘abilities’ will by itself create room for emotional and spiritual well-being and perhaps life itself will rush in to fill that extra room.
  6. Neither hasten nor postpone: Maybe there will be a time when we will be able to ‘cure’ mental disorders, meanwhile, till we can only manage it, let’s do so with patience. Our mental morbidity across age groups is around 11% which in actual numbers translates to 150 million Indians requiring active intervention. This isn’t a spectrum that can be dealt with another pharma revolution so the only way out is through. Creating infrastructures that one may hold on to during this ordeal is our best bet at present.

I do hope and am optimistic that one day science will catch up and provide a cure for the entire array of mood disorders, dementia, degenerative disorders, learning disabilities and many more. Till then human touch is the best bet that we have.

(I had never given a serious thought or worked with palliative care units and hospices though they were always right next to me. This changed after I first heard a talk from Dr. B J Miller titled “What really matters at the end of life?” This article and all my further interest in building care around comfort is dedicated to that talk, which to this day remains a big source of inspiration.)