What is it like to care for someone you love who is dying from advanced cancer at home during lockdown? Kate Binnie discusses how it can heighten isolation and moral distress for the family caregiver

One evening in early May during lockdown, Alan calls me almost raving with exhaustion. He’s caring for his mum, my friend Mary, who is in the final stages of stomach cancer and who has chosen to die at home. It seems to him that this last part—where she has stopped eating or drinking and is in bed hooked up to a syringe driver for pain relief and sedative medication—is going on forever. Tonight she seems irritated and upset although she is not coherent, and Alan cannot soothe her. There is a live-in carer who is helping with the heavy lifting, changing of sheets and so forth, but otherwise Alan is completely alone apart from short daily visits from the community nurses. We talk for a while and I suggest he a) tells the palliative care team what is going on and b) writes down how he feels. An hour or so later an email arrives:

In lockdown with having more than too much time on my hands, I question how in 2020 this cruelty is continuing without any other choice than to endure it or look away. 

The nurses keep saying that the drugs are “keeping Mum comfortable” but I can’t see there is any way to describe what I witness to display any kind of comfort—a slow death is not comfortable for anyone no matter how you sugar-coat it. 

Alan is right. There is no evidence to prove that sedation improves quality of life for the patient with terminal delirium/agitation and of course we have no first-hand accounts from dying patients to draw on. [1] What he describes is the shock and moral dilemma of a totally untrained and unprepared member of the public, caring for a loved one in the last phase of life and finding it hard to communicate effectively with the professionals charged with his mother’s care. All this is made worse due to physical isolation during the covid-19 pandemic.

I feel like I’m failing my Mum, but actually it’s the law that is failing us both. I have had to administer oral morphine as the carer is not allowed because it is a controlled substance.  My mind has turned to helping her end it, but I know she would not want me to ruin my life by doing something that would put me in prison. The desperation to see my mum in peace is a hugely strong emotion.  It made me wonder how stressed I, or someone in a similar position, has to get before the wish to end the suffering becomes stronger than self- preservation. 

I have also considered taking some of the anti-anxiety medication that has been provided for her just so I can sleep. If I found it all too much, I could drink the three bottles of morphine and I assume that would do the trick.  Being someone that has struggled with life in the past and has turned to drink and drugs as a coping mechanism I’m amazed that I am the person that has to administer and has access to all these drugs. 

Alan’s complex feelings about being in charge of controlled medications do not appear to be singular.  A recent review of family caregiver experiences of managing medications for patients dying at home revealed a lack of training and support for family caregiver who worry about over or under-medicating their loved one. [2] Patient and family attitudes to anticipatory medications and issues around misuse in home deaths are under-explored in the literature. As Alan discovered—and the Wilson review corroborates—health professionals lack confidence in discussing the ethical implications of family care givers becoming medication gatekeepers at a time of extreme stress and anticipatory grief. [3] A stress that is magnified during lockdown where normal structures of support are unavailable leaving Alan feel traumatised, angry and abandoned.

How on earth is it kind to put a family pet out of its misery but somehow say it’s ok to drag dying out like this in a human? Do you ever stop being a child when it comes to watching your parent deteriorate and have no real belief that they are not suffering? Surely this is traumatic for anyone?

With the lockdown as it is, I cannot share this with people properly and have to make do with video and phone. I’m glad I’ve managed to hold on to rational thought and have not acted illegally due to immense pressure added to the temptation of having the means left right under my nose. 

How many people will maintain that rationality in this lockdown, and whose fault would it be if they buckled under the strain?  At the very least collective responsibility but most likely the individual would carry the blame, and all the people that can’t face up to the truth about this problem with the law will continue to live in the world they describe to themselves as ‘kind and comfortable’ without acknowledging that other people feel their loved ones are being effectively tortured and the onlookers traumatised.  It would never have been mum’s choice to die this way.  

In spite of current urgency in the media and within health and social care cultures during the pandemic to talk about death, dying and grief, there’s another level of this conversation about dying that we are still not having. Yes, advance directives are important so that treatment plans, place of care, and death can be discussed, and informed choices made in good time. But what about the end bit? Is the messy reality of and fallout from a home death really considered?

Specialist palliative care professionals are trained to meet the physical, emotional, and ethical needs of patients and families, but they are not resourced to be available for all home deaths, all of the time. Getting adequate home support (especially during lockdown when resources are directed elsewhere and infection risk reduces human contact) requires hugely responsive joined-up thinking, enough manpower and resources, competent relatives and excellent communication.  It only takes a few mis-timed, mis-judged, and overly stressed conversations for this fragile system to break down. And still—the body takes its sweet time. There is nothing more lonely than waiting for someone you love to die. Even experienced doctors in this position are pushed to re-appraise what amount of suffering is acceptable at the end of life. [4]  

A survey from 2019 by Dignity in Dying revealed that 73% of people with a life-limiting illness with six months or less to live would choose to change the law so that they could choose an assisted death. And yet in practice conversations about this are often taboo. My mother—who died nine months ago at home from heart failure—kept asking about the possibility of assisted dying in spite of her strong spirituality and huge optimism. This was not depression or despair, but a fine mind and a loving heart wanting to maintain her dignity and protect her child (me) although I reassured her constantly that we would cope and that it would be OK. I was there when she asked the specialist about it and there was a sense of real discomfort in the room, as if she’d made a bad smell at a polite dinner party.  It took the two of us, supported by a fantastic GP and heart failure nurse, working calmly and consistently with everyone involved with Mum’s care to have open conversations about dying, until we had clarity about no more hospital admissions, no more oral drugs, or other treatment.  

I have over 10 years’ professional experience of being with dying so knew what to expect when Mum’s time came. For example, I understood that there was a complex and delicate relationship between the patient (Mum) the family care giver (me) and the healthcare professionals, and that the maintenance of this relational triangle was key. [5] In terms of actual dying, I recognised that the introduction of sedatives would reduce mum’s ability to communicate, and towards the end I knew what the frightening changes in Mum’s breathing meant and also that this might go on for some time until her last breath. But for most family members, watching someone die at home with all of the responsibility that this entails, is an un-familiar and un-held experience, broken only by the precious 30 minutes a day when the community nurse visits to introduce some calm, practical sense into what feels like a Kafka-esque alternate reality. [6] And remember, this was pre-lockdown.  I was not alone and had my family and friends around to help me rationalise, to provide physical comfort and time to eat and sleep.

I suggest that alongside the current policy-level drive for supporting home death underpinned by evidence that this is what many people would choose, there needs to be a rapid re-appraisal of what this means for family members who are not trained or supported to do the job of extreme caring (which includes the administering of controlled drugs), and for which they are totally unprepared. [7] Funding and provision must be made within primary care, informed by the principles and practices of palliative care, to properly educate and support families through the dying process and into bereavement so that what Alan describes in the desperate last 12 hours of his mother’s life does not end in long-term mental health consequences or worse, a suicide or prison sentence. On a more subtle, emotional level we need to understand that calling NHS111 at 2am when your mother is terminally agitated is a cry for help from someone experiencing the searing pain of a breaking attachment.  

The next morning, I check my phone.  Mum died at 3.45am.  

I call Alan who is relieved and exhausted.  He is facing the organisation of his mum’s cremation, the sorting out of her stuff and his life onwards in a seemingly endless lockdown.  There isn’t going to be a funeral.  I suggest he try to get some sleep, talk to his GP, think about bereavement counselling, but he is in no mood for any sort of healing conversations with the professionals. I want people to know about this Kate he insists. I can’t be the only one this is happening to, can it?  No, it can’t be. Around 450 people die every day in the UK from cancer, and about 25% of all deaths occur at home. What is it like for those families at the moment with huge pressure on services and hands-on community support from friends and relatives an infection risk and therefore forbidden?   

The covid-19 pandemic has shone a fresh light on the importance of talking about dying, loss and grief in strange times where relationships are cruelly truncated by sudden hospitalisations, induced comas and separation from loved ones and community rites of passage.   But deaths like Mary’s from cancer are happening every day, all the time.

Alan’s story shows us that what is a difficult and lonely experience at the best of times is made so much more traumatic during lockdown.  Alan hopes that sharing his experience will lead to a greater awareness of just how traumatic it can be to facilitate a home death (which sounds cosy yet can be anything but). He wants to tell us about what he feels is a cruel lie that dying is kind and comfortable, and he challenges us to examine the dissonance between the reality of his lived experience and the beautiful idea of the “good death”. 

Kate Binnie is an allied health professional (music therapist) yoga and mindfulness teacher with an MSc in palliative care from King’s College London where she is a guest lecturer in psycho-spiritual care.

Competing interests: KB runs CPD training for healthcare professionals at https://www.sobelleducation.org.uk. Kate’s research and blogs are at the Wellcome-funded www.lifeofbreath.org project, exploring breathing and breathlessness. She is also carrying out research into psycho-spiritual support and training for healthcare professionals with the Oxford Centre for Spirituality and Wellbeing https://www.oxfordcentrespiritualitywellbeing.co.uk 

Alan and Mary are not real names. Alan wanted his words to be shared in full and has signed a patient consent form.  

References:

1] Beller EM, van Driel ML, McGregor L et al Palliative pharmacological sedation for terminally ill adults. Cochrane Database Syst Rev. 2015

2] Wilson E, et al Managing Medicines for Patients Dying at Home: A Review of Family Caregivers’ Experiences, Journal of Pain and Symptom Management 2018

3] Bowers B, Ryan R, Kuhn I, Barclay S. Anticipatory prescribing of injectable medications for adults at the end of life in the community: A systematic literature review and narrative synthesis. Palliat Med. 2019

4] McPherson, T. My mum wanted assisted dying but we watched her die slowly and in pain  BMJ 2012;  344 :e4007

5] Binnie, K. Exploring the “thin place” between life and death: Compassion Focused Relational Music Therapy for terminal agitation in advanced cancer. Approaches 2019

[6] Trice ED, Prigerson HG. Communication in end-stage cancer: review of the literature and future research. J Health Commun. 2009

7] Gomez B, Higginson, IJ, Calanzani, N et al & on behalf of PRISMA 2012, ‘Preferences for place of death if faced with advanced cancer: a population survey in England, Flanders, Germany, Italy, the Netherlands, Portugal and Spain‘, Annals of Oncology 2015