Hoping for the best!

Most of us have experienced ‘the pain’ caused due to the death of a loved one, at least once in our life. Each of us wish for our loved ones to spend their last days surrounded by people who mean the most to them and for them to eventually pass away without pain. Rightfully, each of us also deserve to have such an end to our lives.

Now, let me tell you my story.

I studied nursing in India and have been working in Ireland for the past few years. In October 2022, I came home to visit my sick mother, whose health was deteriorating due to her cancer and related infections.

In the nursing homes that I have worked at, the dying person was always sent off with great respect and dignity. Enquiries are made about the person’s last wishes, care plans are carefully designed, the required pain and other medications are provided, and if necessary, specialist palliative care teams were also called in to create a positive experience for the patient and their caregivers during this time of transition. The caregivers / relatives of the dying person are treated with utmost respect and provided all the help they may possibly need during this difficult time.

The situation in our country is unfortunately very different from what I’ve just shared.

My mother was admitted to a private hospital in Southern India and was subject to a few unnecessary treatments. Most often, the nurses would only visit her at specified times when they had to give her the medication. Sometimes they even ordered the family to help in caring for the patient or wash dishes after them in cases where a tube feed was given. Needless to say, I didn’t meet anyone with even a morsel of compassion or empathy towards my mother (a dying patient) or her relatives during the entire time while she was admitted. I don’t believe that it would have been much different in another hospital though I am not trying to defame any health care institution.

I watched my mother approach death each day with horror, despite seeing death often in my work situation. Her time was approaching. As per my mother’s wishes, I agreed to inform the doctor to not transfer my mother to the ICU, which is what they do usually to treat the pain or agitation. Like her, I too wished for my mother to be with her loved ones during her last days.

When my mother was dying in extreme pain and terminal agitation, I asked the doctor if she could be given some more painkillers, as her usual painkillers were not effective. The doctor responded that if we needed any more pain medication, then it could be given only in an ICU. The doctor went on to explain “Due to the side effects of these drugs, they are only given in the ICU as per our rules and regulations”. Hearing this, I could only come back helplessly. I didn’t know how long I was going to have to watch my mother suffer in terrible pain.

Slowly and painfully, my mother’s soul left her body.

As I write this a few months later, I wish that no one else will have to undergo the traumatic experience that my mother and our family had to go through. A lot of changes will however need to happen for this to not be the norm.

1. Health care providers must be able to identify and provide palliative care for those nearing death.
2. Health care providers should not give any false hope to the patient or their caregivers / families.
3. Health care providers should refrain from pursuing active treatment (mainly just for financial benefits) when it is clear that death is imminent.
4. Provisions must be made to administer pain medication as needed for the dying person without having to go to the ICU. (What does it even mean to ‘have side effect for a dying person?’).

I would like to remind each of you that a death affects not just the deceased but also their close relatives and friends. For several, this is a wound that never heals. Healthcare professionals and institutions must be trained and empowered to ‘provide care’ for this never healing wound.

I don’t know if ‘just I’ can do anything. I can only hope to create a ripple for a big wave to be formed. I only wish that India’s health care system takes a big step forward towards building a strong palliative care system which will ensure the provisioning of quality health care and respect the rights of a dying patient. I hope that India will also one day provide better quality of end-of-life care and make its way up the Quality of Death Index.

May be, after a few years, there will be a land that Gandhiji dreamt of.

 

 

 

 

Note: This article is a republication from the November edition of the Indian Association of Palliative Care‘s free monthly e-newsletter.