When treatment started failing 66 year old Siew Ching, the family became divided into different camps. Some wanted her to stay in hospital so that she could receive maximal supportive care. Others wanted her to be discharged so she could go back home, while some wanted her admitted into a hospice for terminal care. The meeting concluded with the consensus that there would be no further active treatment and that Siew Ching would be discharged as soon as possible to a hospice for terminal care. But since she developed shingles, she could not go into hospice care immediately. She now lies alone at the hospital with no one from the family visiting her?
What do you think? This was clearly a difficult moment for the family. How could this have been handled differently?
I think the situation is
I think the situation is pretty much the same even in the Indian context. Differing opinions confuse the patient who is already overwhelmed with the illness/condition. Unless the patient has clarity and is able to convey that to the family and the family respects his/her view point, the outcome is bound to be confusion and chaos.
My mother was diagnosed with breast cancer (advanced stage) 6 years ago . As she began deteriorating, the doctor gave us options of palliative care at home and/or hospitalisation. I was the one on the phone with the doctor constantly, updating him, getting clarity, and shared with my mother both options as the doctor had suggested. Personally, I was happier for her to stay home and take care of her myself as even the drive to the hospital from home had started causing her a lot of pain and discomfort. She chose to stay at home and I supported her in her decision. Respecting the patient's views is key!
This is heartbreaking.
This is heartbreaking. Something about being alone in a hospital with no one to care for you tears me apart. No one should have to go through that. While I understand the elder brother wanting to fight it out until the end, I do believe a time comes when you must let go. I only wish the two camps in the family had a more conciliatory attitude towards each other. They could've agreed to some more time under maximal hospital care – a 'one final chance' if you will, setting a deadline acceptable to the elder brother and then moved to hospice/terminal care. That would also allow the caregiver in her elder brother to reconcile himself to the fact that he did the best he could. Regret at not having done enough (often misinterpreted as guilt) is the toughest burden to carry for caregivers.
Thank you Sanjana, Maya and
Thank you Sanjana, Maya and Ivy for pitching in
You are right Sanjana. It
You are right Sanjana. It never should be guilt and hopefully not even regret. Thats where talking to someone neutral would always help
It is sad when the care
It is sad when the care-recipient is stranded and has no where to go or no one to look after her/him. I feel that there should be a voice representing them and perhaps a law to impose on her/his family to take ownership to care for their recipient. :(
Get the family members to
Get the family members to know the patient’s wish regarding: (a) types of treatment he/she wants, (b) his/her preferred place of care (at home or at a hospice) (c) his/ her assigned substitute decision maker when the patient still has the mental capacity to indicate theses through advance care planning sessions (facilitated by a health care provider together with the patient and his/her two family members).