As a GP here’s why I feel conflicted about the Assisted Dying Bill

As a politician, I want nothing more than a fair and accessible society for all. However, as stated above, I fear the implications for my profession.

Shabina Qayyum is a GP, Labour Party Councillor in Peterborough and Cabinet Member for Adults and Health

I take the deepest breath before I can put thoughts to written word. The second reading of the Assisted Dying Bill has now been passed in Parliament amongst voices of rejoicing, and in contrast, those voices that are somewhat less so, seeking clarification as to what the next steps will entail.

From 2010 to 2011, I worked as a palliative care doctor at the Cransley Hospice in Kettering. It couldn’t have come at a more challenging time in my life. We had three children under 6, with our fourth on the way. Asad (My husband) had flown a week earlier to Darwin in Australia for a year’s Fellowship in Ear Nose and Throat Surgery. Nothing in my experience in Medicine could have prepared me for Palliative care. Indeed, I thought back to my days in A&E in 2005, when I found myself working on the day of the 7/7 terror attacks and reassured myself that if I was able to come through that, I could survive any placement. I was given a wake-up call over the next year in Palliative Care.

The beds were at capacity all the time at the Hospice. We witnessed anywhere between one to three deaths a day. We stood in front of the board on the ward every morning to discuss the patients on our palliative care list who were at home and would run through those who would be journeying to make their way towards our embrace for symptom control or admitted for End of Life if they chose to, or as per their wishes, be treated at home by a Macmillan Nurse. Sometimes, there were tough choices as to who would need a bed the most, but those decisions would take place with Consultants who had seen the patients, nurses who had nursed them in their homes and very much took into consideration the factors surrounding the patient, such as, did they live alone? Were their family able to manage their care needs, or was it the patient’s wish to spend their end of life at the Hospice? A patient who wishes to be sent to the hospice will almost always be accommodated.

My view on death changed when working at the Hospice. My Consultant, Dr Shah found me one day, head in my hands crying in the coffee room and asked me what was wrong. It had been two weeks into the placement; I had now overseen, on average, 2-3 deaths a day taking place, but I couldn’t get out of my head the faces of the families who were spending their last moments with their loved ones.

A woman with a lack of symptom control who was terminal with Gastric Cancer had been brought in, and she told me when I went to her bedside that she was so excited as her granddaughter was coming to see her, and she, too, was expecting like I was. She told me she would feel at peace seeing me walk around the wards as I reminded her of her granddaughter. We managed to bring her vomiting, for which she was admitted, under control. She expressed a wish to die at home, and I crossed her in the corridor whilst she was being wheeled out on a chair. I leaned over and held her hand. “You’re going! I said. I will think about you and remember you.”

She smiled. She had lived a full life and was still driving at 82 before her diagnosis. She also lived alone, but her son and his family were going to move in with her during her last days, and she expressed that dying at home, surrounded by her loved ones, was her preferred choice.

She placed her hand on my pregnant abdomen and looked up at me with her eyes glazed over with moisture, “and I will remember you too. Thank you for everything.”

Dr Shah changed my perception of dying, not just being an event to mourn over. I learnt that death should be discussed openly and that those approaching the end of life must be helped by celebrating who they are, what they have done in their lifetime, and what they did to contribute to others’ lives. The families were tied into such decisions, and as a result, we saw people married in the Hospice, and birthdays were celebrated. We learnt that death could also be spoken of as the culmination of life, but it was imperative to celebrate the person who had reached their last few days before death. Those who then arrived at the stage of death would then be honoured, with the process allowing for families, or for those that had none, a nurse to sit next to the patient, holding their hand and ensuring they would be helped through the process of death, a profound experience and one that I can’t quite put into words. I can still picture the one occasion when a patient dying from cancer and having no relatives was taking her last breaths. I walked into the room to see the nurse stroking her head, holding her hand, and as she took her last breaths, the nurse, ever so gently and softly, spoke, “I’m here.. it’s ok..” until her last breath took place. That image will live with me forever, and that wonderful nurse taught me how patients in their process of death should be honoured with good palliative care in place when they reach their end.

Sometimes, however, some journeys were not as planned as we had hoped. Patients whose pain would leave them exhausted and suffering would often visibly display the anguish their symptoms were having on them. It was so difficult to see them suffer, and usually, large doses of medication would render them sleepy but out of pain. Decisions that consultants on the ward made had to be made in the best interests of the patient, but the team was reassured that the patient was not suffering, albeit their ability to remain alert had diminished due to the medications, coupled with the exhaustion of fighting their condition.

The above illustrates my experience in Palliative Care. As a GP and now as the Cabinet Member of Adult Social Care, my life work involves seeing and treating some of our society’s most frail and vulnerable. I am also responsible for overseeing the services that our Adult Social Care users will need.

For me, this bill was presented incredibly respectfully in Parliament. The arguments for and against it were heartfelt and genuine. Many were articulated as lived experience, and one cannot refute lived experience or its impact.

The Bill will now be scrutinised, line by line, by MPs and a panel of experts to come to Parliament in its final form.

My position on the bill has been clear. I am against it, and the reasons for being as such are as follows:

We have seen the proposed legislation that states there will be two doctors and a Judge who will need to sign off on the decision taken by a patient who wishes to die. Given that the end of life is such an arbitrary process, it is impossible to predict the end of someone’s life with a terminal illness “definitively” within six months (there is a possibility patients can live for far longer.) This gives rise to a plethora of debate. Many patients are also symptomless when they are told their illness is terminal. Many of those diagnoses may be cancer that has been incidentally found and has spread as such, which renders a terminal diagnosis, and patients will be told that they have six months to live. If a patient expresses a wish to die within those six months that have been given (although the possibility is they could live for far longer,) how is the legislation able to predict a change of heart, or indeed by family members who find themselves in the throes of regret down the line, once such a decision has been executed? This will be a decision that they will have to live with for the rest of their lives. Just as I remember every single patient who died whilst I practised in Palliative Care, any clinician will remember those patients for which they sign off their decision to assist them to die.

In light of the above, how does the legislation safeguard or predict the possible negative emotional impact that would remain with the clinician assigned to sign off death? The variants of the Hippocratic Oath descend upon us all at graduation, reinforcing the tenets of life being a sacred entity to be honoured and protected. The Bill in its current form causes an element of sacrilege to the pledges of that Oath. Would the Oath be altered? Would the Good Medical Practice guidance of the General Medical Council be changed to reflect the new legislation if it becomes law? It is a timely reminder to make ourselves aware of Doctors being subjected to the annual appraisal process to assess their fitness to practice post-Harold Shipman.

Currently, Doctors who find themselves subject to a complaint by the GMC will go through months, if not years, of scrutiny to render themselves clear of allegations levelled against them. My concerns around the Bill in its current form, therefore, are the Medicolegal implications after the event of a signing off a decision, enabling a patient to die. What if a family member respectful of the wishes of the patient at the time were to change how they feel in the aftermath of the event and direct blame towards the clinician, citing that they were reliant on the information provided by the clinician and due to the emotional impact of seeing their loved one in difficulty, didn’t fully comprehend how they would feel after their death and points to the Doctor to bear that responsibility of apparent wrongdoing? Would such Doctors be subjected to an investigation? And will the Bill in its finalised form account for this eventuality?

There is also the circumstance whereby a Doctor refuses to sign a declaration. A patient may then suffer uncontrollable pain, and no other Doctor is willing to sign the order. (The current form of the Bill accounts for this.) What eventuality must the refusing doctor now face if a patient or relative complained against that doctor for refusing to sign?

Pain relief can usually be addressed. It is accepted that palliative care services must be improved. Still, when the NHS is already under-resourced, a watertight care provision must be at the forefront of priorities for palliative patients. The above is another example of a Medicolegal Labyrinth that we risk entering, placing incredible stress on the profession.

Adult Social care has many facets formed of partnerships across the board. The theme across nearly all organisations that represent disability in its various forms is the desperate need for disabled and less able-bodied people to be treated equally in a society that is littered with unconscious and conscious bias. And whether we accept it or not, disabled people are often not considered as equals. This has led to a culture of our disabled population feeling as if they are a burden on society. As a Cabinet Member for Adult Social Care for a Local Authority, the elements of social isolation, Mental health issues, exhaustion, carer implications and inequalities in society are already apparent to the teams I work with, day in and day out. We contend with measuring service provision and linking with multidisciplinary teams such as ICBs and voluntary sector organisations to predict and determine care pathways for our service users. To add to that another layer, the Bill in its current form will make for not only a Care Service that may see an increase in Mental Health issues placed on the population, but it also opens up the door by the mere presence of the Bill to place pressure on the Disabled and frail to consider themselves to be a burden. This extra layer of contention makes for an already discriminated population to feel even more disenfranchised. This population must not be left behind, and their voices must be heard. While the bill undergoes scrutiny at the relevant committee, I certainly hope the voice of the third sector representing these groups is heard and those they help are accounted for.

As a politician, I want nothing more than a fair and accessible society for all. However, as stated above, I fear the implications for my profession. If the Bill in its current form were to become law, I would need to reconsider continuing to practice medicine. I was taught to dignify and sanctify life, and I can be reassured that I can sleep at night after an arduous day at work. However difficult it may be, I did right by my patients today.

I must not end by validating the experiences of those who favour the Bill. Their stories are relevant, and it is a call to act to fix the broken care and NHS system we have all been witness to. Their lived experiences carry with them the pain of helplessness and suffering. If they have seen this as a momentous day for all they have lived through and is, for them, a reason and pathway to closure, I am pleased for them and hope that this will go some way to feel that today’s democracy was indeed executed most beautifully. Respectfully, profoundly, and as an ode to all who fought for this legislation to be heard, It has been achieved remarkably well.