Table 4 Task of making a palliative care referral

Stigma associated with palliative care

When you refer to the palliative team, some of the parents think that it is for end-of-life management (…) Parents think that some major issue is going on, and that’s why they have been referred to palliative care. (P 008)

One thing is that family feels that you have sent to the doctor dealing with death. (P 006)

Palliative care is associated with end-of-life care (…) If we have that thought process and we are not able to get over that thought process, how do we expect our patients and families to get over that thought process. (P 020)

The family hears this word, palliative they say but you are trying to treat, cure my child why do you want me to engage with it [referring to palliative care]? (…) That means you’re telling me that my child is not really going to live. (P 009)

Navigating illness and treatment related factors

Child needs continued input in leukaemia, which is relapsed or refractory and continue to need blood support because there is going to be bleeding and they need blood all the time. So, these children we like to keep them under our cover. (P 007)

You know, which way it is going to go. I usually refer to the palliative care team at that point before the child has got any symptoms. (P 001)

If the curative option of treatment is going on, there will not be any referral to the palliative care. I don’t think that it will go well with the patient’s mind, but unless it is for symptom control. (P 006)

Attitudes of parents and families towards palliative care

What is really their role? They are not counsellors, they are not social workers, they are not doing psychological medicine. So, you know, what exactly is their role? that is what the family thinks and likes to know. (P 005)

From the family perspective, they will think that the doctor has completely, you know, abandoned this patient by referring to other departments. (P 012)

When a family is not ready, then there’s no point thrusting, they will agree for symptom management, but they want disease directed management as well. (P 010)

Palliative care resource constraints

It is difficult for patients with advanced malignancies to access palliative care or with complications to get admitted under palliative care. It is because of lack of inpatient beds and most of them had to be managed on outpatient basis, which again, becomes very difficult because titrating medicines and pain control on an outpatient basis becomes quite challenging. (P 005)

Seeking and asking for referral is easy. If today every single deserving patient is sent to the department of palliative care of my hospital, they will be completely overwhelmed. I do not think that they have the people to handle that kind of a load. (P 014)