I DISTINCTLY remember the moment when we heard the doctor say that the cancer had metastasized in a number of organs and had advanced to the point where there was nothing, therapeutically, the doctors could do about the disease. It was time to prepare for the end. The doctor was not sure when the end would come, but, he thought, it would be anywhere between a few weeks and a couple of months.
He just went on to express his sympathy and to advise us to keep our loved one comfortable and to use and enjoy the time that was left with our loved one.
But we still had to figure out how to ensure the patient’s comfort for the remaining period of life. We had to figure out how to ensure the patient was able to enjoy as good a quality of life as was possible under the circumstances. We also had to understand what kind of preparations we would need to not only to ensure the above but also to be ready for any and all healthcare eventualities that might arise. We had not dealt with such a situation before: how were we supposed to know how to care for a patient who was sliding towards the ultimate transition?
Losing a loved one is hard enough. It needn’t be made worse by having to deal with patient care problems.
The oncologist was of no help in this regard. In fact, he seemed to be in a hurry to hustle us out of his office after he had reclassified the patient as palliative from therapeutic. Similarly, the GP whom he referred us to was of little help: it took us a couple of weeks to get an appointment with him and even when we were able to see him, apart from a few platitudes, we did not get anything from the doctor.
The next month was tough going for the patient as well as the family. We googled and surfed, we talked to any and all doctors we could get a hold of. We even talked to people who had gone through similar episodes with their loved ones. We learned through trial and error. Which foods worked and which did not. How adequate nutrition could be ensured and how dehydration, given the lower liquid intake, could be avoided. Which medicines helped with the pain, which helped with anxiety and which ones worked for sleep and which ones did not.
Which medicines worked well in combination and which did not. What sort of nursing care was available; what kind was needed and when. What sort of general support was needed. What we could manage at home and when it was time to go to hospital. As we learned, I wish I could say that we did very well. We did not. We made mistakes and had to change course many a time. It was a period of high tension and anxiety.
It need not have been like this. Losing a loved one is hard enough as it is. It need not have been made more difficult and more anxiety-filled by having to deal with logistical, patient care and management problems as well. The oncologist/hospital managing the therapeutic effort could easily have had a small department (a few doctors and nursing staff) focusing on hospice and end-of-life care and could have advised us on managing this part of looking after the patient. This was not the first person they would lose and this would not be the last.
How does it not make sense to have such a department that can ease the logistical concerns of patients and their families?
This is not the first time I have seen this happen. A while back, a similar situation involved an uncle and his family. At some point, the cardiologist said that there was nothing more that he or the hospital could do through medicines or even through surgery. The family was left to fend for itself. And the next few months were far from easy. The family did not have the human resources needed to manage care effectively at home. And none of the hospitals in the smaller city my uncle lived in had the expertise to provide effective hospice care. The family went through a lot of emotional trauma in trying to manage things.
We hear that a hospice facility is being constructed in Lahore and is expected to be operational by the end of the year. It would be a much-needed addition, but one hospice facility is definitely not enough even for a city the size of Lahore. It is definitely not enough for a country of 200 million people. Hopefully, the hospice can be a hub that trains people to provide hospice and palliative services at homes and in other hospitals as well. In addition, most large hospitals should have palliative service experts on their staff to help prepare patients and families and to provide support as and when required.
Palliative care need not be for a short period. In some diseases, even if a cure is not possible, the course of the disease is slow or can be slowed down so that the decline in the patient is not rapid. This can continue for months and even years in some cases. The patient needs to have as good a quality of life in the period as is possible. The family/caregivers also need support to ensure they are able to care for their loved one as well as they can.
Even with good end-of-life care, and leaving aside the emotional trauma of losing a loved one, there are still plenty of hard decisions to be made. Without effective support from palliative experts, the last part of life can be very traumatic for the family as well as the patient. It is high time the medical profession in Pakistan recognises the need for developing this kind of special care.
The writer is a senior research fellow at the Institute of Development and Economic Alternatives and an associate professor of economics at Lums, Lahore.
Published in Dawn, February 12th, 2016