Scenario 19: A planned death from Covid-19
Scenario 20: An unplanned death from Covid-19
These scenarios relate to the following article:
COVID-19: HOPE FOR THE BEST, PREPARE FOR THE WORST – ADVANCE CARE PLANNING
Scenario 19 – A planned death from Covid-19
Dr Lyn Jenkins, co-authored by Ruth Waterman
You are in your mid thirties with a young family. Your father lives nearby, and since his divorce from your mum a good many years ago, he’s managed very well on his own. He is loving his retirement. He still insists on making Sunday lunch every week for you and your brother and the grandchildren, even after his fall last year. Fortunately he’d only fractured his arm – which had healed perfectly – but it had woken you up to the fact that he’s not getting any younger.
One Sunday when you are helping to stack the dishwasher and the children are absorbed in their games, you raise the subject of ageing and whether he has thought about the future. He looks up, a flash of consternation passing over his face.
“What do you mean?”
You begin to talk about how he could write an advance care plan to make sure that things happen in the way he wants, for instance if he develops a life-threatening condition. But he interrupts: “Hey, that’s morbid, let’s not talk about that. Don’t you worry – I’m going to live forever.” And he winks at your brother, who gives you a look that says “leave it”.
As time passes, your father becomes increasingly frail, so you visit almost every day to check up on him. When the Covid pandemic starts, you decide to bring up the subject of advance planning again, this time choosing a sunny afternoon when it’s just the two of you taking a stroll. You talk about how your grandmother – his mother – had died in hospital, comparing her death to your grandfather’s, who had died at home. Your father becomes thoughtful for a moment, but then changes the subject. You stop walking.
“Dad, I’d feel much better if you made a plan.”
After much encouragement, he begins to focus, finally saying that dying at home is probably preferable, as long as he won’t be in pain. He turns to you.
“There’d have to be nurses and I don’t know what. I don’t want to be a burden to you.”
You squeeze his hand. “Let’s talk to your GP and see what can be arranged.”
They have a long meeting with his GP who talks them through the options, including what palliative care is available in the area. Your father agrees to make an Advance Decision, but balks at drawing up a Power of Attorney because of his awkward relationship with his brother. “I’m not sure I want to choose him to be my Attorney, but he’d be upset if I don’t,” he says. “I’ll deal with that another time.”
A few days later, you sit down with your father and brother and, following the step-by-step guidance from an online charity, you write out an Advance Decision, witness the signature, and make copies for each of you plus the GP.
One morning you arrive at your father’s home to find him still in bed. You make him a cup of tea and notice that he seems a little confused. It’s not the first time he’s slept in. You wish you could stay, but you have to pick up your child from nursery. Your brother phones him later in the day, and when he gets no answer, he drives round to find him on the floor, delirious.
He immediately calls an ambulance which arrives promptly. But he is not allowed to accompany your father into the hospital because of the Covid regulations. The paramedics say that your father will get the routine Covid test, as well as other tests, and that your brother will be kept informed. That night the doctor phones to say that your father is a little breathless and is running a temperature, but that they are keeping him comfortable. You fear the worst.
The test result is positive for Covid-19. You phone the GP about the Advance Decision in which your father had stated that he’d prefer not to die in hospital if it can be avoided. The GP says that she can make the necessary arrangements with the hospital and the urgent palliative care team if necessary. You hang up with a sigh of relief.
Not being able to visit your father is agony. Later that day, a nurse arranges a video-call, for which you are very grateful. He is clearly deteriorating, but he assures you many times that he’ll be home soon and right as rain. The usual bravado. “Yes,” you say, “you’ll be home soon.”
The following day, you are informed that he is not expected to survive. The GP sets everything in motion, and your father is brought home. You and your family have already had long conversations about how to minimise the risk of being infected by him. You are already isolating, and you know that your risk of dying of the virus is very low if you take the right precautions. You are apprehensive but determined to give your father the best possible death.
The next three days are remarkably peaceful and serene. The palliative team are kind and efficient, providing PPE for you and lots of advice. They give your father morphine and other medication and provide general nursing care. You spend short periods at his bedside, reminiscing about happy times together or simply holding his hand, and you arrange video-calls with other members of the family.
He gradually becomes weaker, and on day four he dies. You feel you have done the best you can for him. You are told that he has to be cremated. You arrange the cremation: only five immediate family members are permitted to attend – not even your husband is allowed. And no flowers. The short service is conducted by a local vicar recommended by the crematorium. You all arrive in separate cars and sit in different rows. A Covid funeral. Everyone puts on a brave face, but without even being able to hug your own brother, it feels horribly unnatural. Fifteen awkward minutes after the ceremony, everyone leaves to go their separate ways. Of course there is no wake.
You are so relieved that your father had made an Advance Decision. Without it, things might have been very different. The idea occurs to you that when all this is over, you’ll arrange a memorial. The whole family will be there. And it will be beautiful.
Scenario 20 – An unplanned death from Covid-19
Dr Lyn Jenkins, co-authored by Ruth Waterman
You are in your mid thirties with a young family. Your father lives nearby, and since his divorce from your mum a good many years ago, he’s managed very well on his own. He is loving his retirement. He still insists on making Sunday lunch every week for you and your brother and the grandchildren, even after his fall last year. Fortunately he’d only fractured his arm – which had healed perfectly – but it had woken you up to the fact that he’s not getting any younger.
One Sunday when you are helping to stack the dishwasher and the children are absorbed in their games, you raise the subject of ageing and whether he has thought about the future. He looks up, a flash of consternation passing over his face.
“What do you mean?”
You begin to talk about how he could write an advance care plan to make sure that things happen in the way he wants, for instance if he develops a life-threatening condition. But he interrupts: “Hey, that’s morbid, let’s not talk about that. Don’t you worry – I’m going to live forever.” And he winks at your brother, who gives you a look that says “leave it”.
As time passes, your father becomes increasingly frail, so you visit almost every day to check up on him. One morning you arrive to find him still in bed. You make him a cup of tea and notice that he seems a little confused. It’s not the first time he’s slept in. You wish you could stay, but you have to pick up your child from nursery. Your brother phones him later in the day, and when he gets no answer, he drives round to find him on the floor, delirious.
He immediately calls an ambulance which arrives promptly. But he is not allowed to accompany your father into the hospital because of the Covid regulations. The paramedics say that your father will get the routine Covid test, as well as other tests, and that your brother will be kept informed. That night the doctor phones to say that your father is a little breathless and is running a temperature, but that they are keeping him comfortable. You fear the worst.
The test result is positive for Covid-19. The next few days drag in a frenzy of anxiety. Most of the time your attention is fixed on your phone, as you wait for the chance to talk to your father. Not being able to visit him is agony. Each day the nurse arranges a video-call, for which you are very grateful. He is clearly deteriorating, but he assures you many times that he’ll be home soon. The usual bravado. You feel helpless. “Yes,” you say, “you’ll be home soon.” He is not expected to survive.
At 10am on the sixth day of his admission, the hospital calls to say that your father has died. At 2pm, they call again to say you must arrange for the body to be collected within two hours, as the hospital mortuary is full and they need his bed.
You are told that your father has to be cremated. You arrange the cremation: only five immediate family members are permitted to attend – not even your husband is allowed. And no flowers. The short service is conducted by a local vicar recommended by the crematorium. You all arrive in separate cars and sit in different rows. A Covid funeral. Everyone puts on a brave face, but without even being able to hug your own brother, it feels horribly unnatural. Fifteen awkward minutes after the ceremony, everyone leaves to go their separate ways. Of course there is no wake.
For several nights following the cremation, you are unable to sleep. You lie awake imagining what your father felt as he lay dying, alone in the hospital, surrounded by strangers in protective gear. You wish you had been able to be with him, to hold his hand and talk to him face to face.
You hear that a friend’s grandmother has just died of Covid at home, with her daughter at her bedside. It had never occurred to you that it was possible to arrange for your father to die at home. You don’t know how you could have handled it, if there would have been enough support, or if his symptoms could have been controlled. Perhaps it wouldn’t have been possible after all, you think. In any case you know he wouldn’t have wanted to be a burden to you. But you’d never found out what he really wanted; you never did have that discussion.
After four months, your thoughts are still in turmoil and your grief is not resolving. On several mornings you wake to the sensation of your father kissing you on the forehead, his hand resting comfortingly on your shoulder. It feels so real. You burst into tears, realising how much you wanted to touch him towards the end; and now you never will.
You are depressed and irritable. Your work is suffering. Your employer gently suggests you need some help. You contact a bereavement support charity and tell your story to a volunteer. He listens as you re-live that terrible week. If only you could have said goodbye! If only you could have had that conversation about planning! An unfamiliar anger starts spilling out – against the virus, against yourself, against your brother and father for refusing to face the inevitable. Your bereavement volunteer tells you that anger and guilt and grief are common bedfellows. He also says that not being able to touch someone during their final days seems to make recovery more difficult, but that the hallucinations will cease and you will get through it. Eventually he helps you to accept that nothing was your fault – or anyone’s fault.
As the emotional turmoil begins to subside, the idea occurs to you that when all this is over, you’ll arrange a memorial. The whole family will be there. And it will be beautiful.