By Celia Kitzinger, 9th November 2021
She’s in her eighties, with significant cognitive decline, and delirium secondary to numerous infections and “in all likelihood in the last weeks of her life,” said the judge. She lacks capacity to make her own decisions about who she has contact with.
One of her daughters, Ann[1], and Ann’s daughter (P’s granddaughter), Bea, want to visit her one last time, to say goodbye.
But Colin says no.
Colin is the son she lives with, who she’s appointed with Lasting Power of Attorney for Health and Welfare, “entrusting to him decisions about her welfare”, as the judge put it.
He’s banned them from visiting because there’s a long-standing family feud, the details of which were not rehearsed in court, but it was clear that, for the last two years, family division has been deep and painful.
The social worker (a witness) said the “conflict” in the family was such that “on several occasions the police have been called”. The judge said it was “obvious that family relationships have been very fractured, with a lot of hostility, and a lot of blame on both sides”.
The applicant local authority (represented by Holly Littlewood, Spire Barristers) has applied for a declaration that P lacks capacity to make her own decisions about contact with family members, and that it is in P’s best interests for her to have contact with Ann and Bea for one last visit, the details of which were laid out in a contact plan.
The proposal is for a two-hour visit, between 9.30 and 11.30 the following Tuesday, supervised by two social workers. Colin and his wife would be asked to leave the property while it took place.
The Accredited Legal Representative ([ALR] represented by Michael Kennedy, Switalskis) supports the visit as as being in P’s best interests. The ALR acknowledges the excellent quality of care provided by Colin and his wife, and believes that “it could be accommodated that he remains in the property and it shouldn’t cause a problem”.
The other four parties are family members, all litigants in person:
- Colin
- Dan (another of P’s son, who largely supports Colin’s position)
- Ann (P’s daughter who wants to visit P) and
- Bea (P’s granddaughter who wants to visit P)
There were also some social workers in court.
This was a Final Hearing, held remotely (via MS Teams) on 5th November 2021, before District Judge Geddes sitting in Leeds Combined Court.
The hearing
At the beginning of the hearing, it was announced that Colin has made (what the ALR later referred to as) “a helpful concession” and now accepts that some contact should take place between P and Bea and Ann – but he does not agree with the contact plan that the social workers have drawn up. It had also become apparent that other family members now also want to visit, including P’s eldest daughter and her husband, and another son (who are not parties) and Bea’s children (two pre-teens and a teenager).
The judge asked whether pre-hearing discussions could perhaps have resolved the situation given the change in Colin’s position, but counsel for the local authority reported that it had not been possible to reach him, and the local authority had believed that “such a discussion would not be fruitful”. (I think the ALR said that an attempt at formal mediation had been made and had failed.)
The fundamental issue today (said the judge) was whether Colin and his wife would be required to leave the home that they share with P to enable the visit to take place. The social work team “strongly believe” that Colin and Carol shouldn’t be in the house when Bea and Ann visit P “to avoid any chance that the visit is married by the bad feeling that exists, for whatever reasons, good or bad, on all sides”.
This, then, was the challenge before the judge. Should she authorise a visit with Colin in the house (with the risk of conflict occurring), or should she require him to leave for the duration of the visit.
Colin (P’s son and LPA)
Colin was very clear that his own position was that he should not leave the property.
“I’ve cared for my Mum over the past 18 months and I don’t pose any threat towards anybody who comes to the house. I can give my word to the court on that. I will be there if I’m needed for my Mum’s medication and if my Mum gets uncomfortable. There are lots of personal belongings of my own and my wifes in this house and there’s mistrust between us all. For both reasons I would like to be in the house in another room and I hope that wish would be granted. You have my solemn word that there will be no reaction from me.[2]” (Colin)
The judge asked Colin: “Help me with the layout of the house”.
It became clear that the house is quite small. P has a bed in the living room downstairs, and there is only the kitchen and the hallway (and I think a toilet) on the ground floor, so Colin and Carol would need to be upstairs during the visit. “I could be up there and out of the way altogether”, said Colin. “I would be there if needed, and not a mile away.”
The judge asked “how would you judge if you were needed?”. Colin said that he used a “close range camera” to monitor his mother when he leaves the house for short periods: “I can log in on my phone and get readings as to how comfortable she is”.
The use of the camera in this way clearly raised alarm bells for the judge, although she handled the matter calmly and tactfully.
She first pointed out that “the proposal is that you don’t supervise this visit, and it’s supervised by two professional members of the social work team. I would have to put my trust in the professionalism of that team”.
Colin readily agreed that “if the professionals were to call me, that’s the only time I would appear”.
The judge then referred to the “right of your mum to a private and family life”, suggesting that “one of the elements of that might be to give some privacy during the visit”.
Colin agreed that the camera can be turned off, but was obviously concerned about what other family members might do in the house in his absence. He said he wanted them to stay in the room with his Mum (“and the toilet if they need it”) but “not prowl around the house”.
The judge asked him if the camera could be moved to another location, and suggested setting it up on the stairs instead since “nobody would have reason to go up there”.
The judge asked about the size of the room and whether there should be restrictions on the number of people who should be present at any one time “so as not to overwhelm Mum”. Colin described it as a small room that “can feel a bit crowded” with 5 people and added: “For covid reasons as well, I would ask that that PPE [Personal Protective Equipment] would be worn. These people have not been in my mum’s life for nearly two years now.” This had apparently not been covered in the contact plan in relation to family members and the judge seemed to accept that it should be (and that masks and gloves would be appropriate).
The judge then asked what Colin’s view was about other family members visiting in addition to Ann and Bea – the only two family members whose visit had been initially proposed.
Colin expressed some concern about visits from Bea’s young children: “they’ve always seen their grandma relatively well, and have been jumping around and carrying on around her and I think the change in her would massively affect them”. He also rehearsed some grievances against Bea, saying that “I’ve never stopped these children coming. It was Bea herself who stopped the children coming. Because I wouldn’t let her in, she stopped the children coming altogether, to the extent my mum had to walk to the gate to see them”.
Likewise, he said, with a touch of bitterness, his older sister and her husband “have never pursued any contact”. Pushed by the judge as to whether he would facilitate a visit for them “if there was a genuine wish”, he acceded to the authority of the court: “If the court wants them to see their Mum, yes. I just want this over and done with. Whatever you decide, Ma’am, I will follow. Just not too many people at one time please.”
Dan (P’s son)
Colin’s brother Dan was broadly in support of Colin’s (revised) position. “I have had a discussion with Colin this morning and this is the only way this can be resolved quickly”. He was concerned, though, that their mother would feel distressed by the visitors because “she said she didn’t want any contact with Ann and Bea”. He felt that she would “not trust Colin any more for not following her wishes” if he allowed Ann and Bea to visit. He acknowledged that she is now largely unable to express her wishes and was anxious that she might feel distress at being visited by two family members she doesn’t want to see, and worried that she might not be able to show that distress.
The judge said it would be necessary to “rely on the professionalism of the social workers to pick up any distress” and checked with Colin that P does have ways of indicating distress. He explained that she has facial expressions and eye movements that would clearly indicate to professionals that she was unhappy and finding the visit too much.
“There’s been some difficulty in ascertaining what P’s wishes would actually be, and some differences of views”, said the judge. “It’s very helpful that Colin has agreed that there should be a visit”.
“It’s a one-off arrangement, just to say goodbye”, responded Colin. “She does have a right to privacy in her own home. She’s coming to the end of her life. Just let nature take its course and don’t subject her to any more stress.”
Ann (P’s daughter)
The judge asked Ann whether she had read the contact plan and was in agreement with it.
She said she had, but added that CCTV was “a breach of her privacy and dignity”.
“I think Colin agreed with me that the camera should not be on during family visits”, said the judge. “It’s not necessary. There will be professionals present to supervise. The purpose of the camera is to safeguard P on the short occasions when she’s left alone, not to supervise her contact with others”.
She also checked that Ann was happy to wear a mask during the visit (she was).
Bea (P’s granddaughter)
Bea, was also in agreement with the contact plan, and willing to wear a mask and gloves “obviously, for the protection of my grandma”.
She asked the judge to consider approving visits from other family members, including in particular her teenage daughter “who does miss her grandma very much”. She had not yet decided whether or not it would be appropriate to take the younger ones (“I need to think about how this would affect them emotionally.”)
The judge said that there was, as Colin had pointed out, “potential for distress for those children” and that “obviously it’s not for him [Colin] to decide how you bring up your children”. The judge did however “have some concerns about how crowded this visit might be for your Nana. I want this to be a peaceful and enjoyable experience for her”.
The ALR
The ALR reaffirmed the belief that the visit could work with Colin and his wife remaining in the property – as long as he stayed upstairs and removed the camera from his mother’s room. The ALR also said they did not think it “helpful” for P to have visits from very young children and suggested that Bea’s teenage daughter should be the “cut-off point”.
Social Worker
The social worker restated the view that Colin should leave the property “because of the unpredictability of the situation and how hostile it’s been in the past”. She reminded the judge that “police have been called a few times when the family have come into contact with each other”.
The judge asked her: “What do you think about- Forget the children’s best interests, though it’s hard for me as a judge who also does work with children to ignore that, but I am going to ignore it. What value or purpose would it have for P if the young children were to visit?”
“It does sound like P loved these grandchildren very much”, said the social worker. “She used to go to the end of the drive to wave them off to school every morning. They were an important part of P’s life. But would P want them to see her as she is now? It’s hard to say. I think it’s Bea’s decision.”
The difficulty, as the judge pointed out, is that “Bea hasn’t seen her Nana for quite some time, so may herself be underestimating the impact of seeing her in her terminal illness. I wonder if there could be someone on hand to care for the children if they wanted to go out. For a teenager it’s a different thing, but they’re still vulnerable at that age aren’t they. But there we are. I think we’re possibly digressing!”
Local authority
On behalf of the local authority, and by way of closing submissions, Holly Littlewood said:
“You’ve heard all the evidence but – just to emphasise – the local authority’s position is that it’s in P’s best interests for Colin and [his wife] to leave the property for this one-off visit for the rest of the family to say their goodbyes. In the past the police have had to be called when members of the family have run into each other. In order to completely eradicate that risk, it’s in P’s best interests to leave the property. The alternative is for Colin to be in a room upstairs for the duration of the two-hour visit, but it’s hard to see what the benefit would be. He wouldn’t be supervising the contact, or observing his mother. It would be just as easy for the social workers to contact him (if needed) if he were just a few streets away. So, our position is that it’s in P’s best interests for them to leave the property.” (Colin is visible on screen shaking his head as she speaks)
She added, with respect to visits from other family members, that there’s “nothing evidentially to say it wouldn’t be in P’s best interests to have visits from her wider family at this time”.
Judgment
The judge then said she was in receipt of everything she needed to make a decision and delivered an ex tempore judgment. The judgment (as close as I could capture it) was as follows.
It is common ground that P does not have capacity to make a decision about who she should have contact with, and the jurisdiction of the Court of Protection is therefore engaged.
The decision before the court is whether it is in P’s best interests (s. 4 Mental Capacity Act 2005) to permit a visit between family members and P on one occasion for a two-hour period as set out in the care plan. Contact would be from 9.30am to 11.30am (scheduled to coincide with a period when P is not expected to require direct care interventions or medication), and it would be facilitated and supervised by social workers already involved in P’s case, who have provided witness evidence in this case.
It is a condition of the visit that if P becomes distressed, visitors will respect the instructions of the social workers to leave, and the visit will not continue.
The local authority is open to family members other than Ann and Bea taking the opportunity to say their goodbyes – importantly Bea’s children who were very important to P in the past. This is left to the exercise of parental discretion of the mother.
Any adult who wishes to attend for this visit must first have had a discussion with a social worker about what’s expected. There must not be a crowd at P’s door and the social workers managing a great number of family members. It’s got to be a visit that is peaceful and where the focus throughout is on P’s needs, and that may mean that numbers need to be limited. I don’t want the presence of other family members to interfere with Ann and Bea having the time with P they wish to have.
An issue that might have been contentious but is now agreed is that Colin will disconnect the camera that he uses to check on her when P is alone for short occasions. It is way too tempting, whether he’s upstairs or out, to check in on his mother, and to do so would interfere with the privacy of P and other family members. The camera will not be switched on, and will be removed for the duration of the visit.
I want to give credit to Colin for changing his position on visits over the course of this week. P has numerous children and grandchildren. It’s a large family with P in the past having been at the centre and it’s very sad that family relationships have become so fractured. I’ve developed a picture of P as someone who has enjoyed having a big family, and I take that into account as a value she’s held previously. She’s been extremely involved with grandchildren and great grandchildren. There are disputes about the nature of those relationships but everything I’ve read, even in the context of family hostility, tells me that it is in her best interests that those family members who love her and hold her in high regard be given the opportunity to say their farewells in person. I accept the evidence of the local authority that she is more likely than not to gain comfort and value from a face-to-face visit. The touch of a hand can’t be replicated over video.
There has been hostility between family members over the last couple of years and the local authority proposes that Colin and his wife should leave the property to avoid any risk of family members coming into contact with each other.
I found Colin very genuine and his role as P’s Health and Welfare Attorney is very important, but I have decided that he and [his wife] ought to vacate the house for the short period of the visit. Having read about the conflicts in the past, it’s obvious that for everybody this is a highly emotive and stressful thing to happen. Family relationships have been very fractured, there’s been a lot of hostility. The police have been called in the past and there been a lot of blame on both sides. While I hope that those relationships can be repaired in the future, I don’t think that’s going to happen between now and Tuesday. It would be an added layer of stress on everyone – for Colin to be hearing people coming in and out, for other family members worrying that this visit in the most private of moments is being overheard. I hesitated before adding this additional burden to Colin and [his wife], but have decided that they should leave for the two-hour period.
That is my decision.
Reflections
This was potentially quite a challenging hearing for the judge, with four litigants in person from a feuding family, for whom mediation attempts outside of court had failed.
In fact, though, all family members were calm, controlled and courteous in court, and Colin had already made significant moves towards accommodating others’ wishes to visit P. Although the judgment was not as he would have wished (in that he will have to leave the house for the visit to take place), he did say “thank you” to the judge at the end of the hearing.
As an observer, I experienced the judge as sensitive to the needs of this family in conflict, while being clearly focussed on devising a practical way forward.
She did not engage with any family comments about the history of, or reasons for, their ongoing conflict. She didn’t enquire, for example, about why there was “mistrust” or “bad feelings” between family members, or express a view about them, other than to hope that their differences might be resolved in the future. She didn’t challenge Colin’s perception that there was a risk that family members would “prowl around the house” looking at his personal belongings. She didn’t enquire as to why Bea had allegedly not allowed P to see the grandchildren, except as they passed the garden gate. With the exception of the small “digression” relating to the best interests of these grandchildren, the judge focussed exclusively on what was in P’s best interests, without becoming embroiled in the family dynamic. This involved some very practical concerns: the timing of the visit, the layout of the house, management of the camera, and where Colin and his wife should be during the visit.
The hearing was listed for two and a half hours – and the judge had another hearing listed for the afternoon. Despite what I know about the busy court lists and over-worked judges, there was no sense of rush or impatience in this case, no suggestion of “hurrying” anyone along. The judge was calm, confident, and did some “thinking aloud”, which helped everyone in court to understand how she was moving towards making her decisions.
Despite this generally positive experience, though, nobody could possibly want to find themselves in court, with a judge having to decide on whether, and how, and when and under what circumstances family members can visit a much-loved mother (grandmother, or sister) who is dying.
And, of course, it’s hard for the judge to figure out what P wants, or would have wanted, in this situation. She’s no longer able to express her own wishes.
Many people hope for a deathbed scene with their loved ones beside them, holding hands, sharing stories, reminiscing about the good times. Where there have been difficult relationships, both the visitor and the dying person can ask for, and receive, forgiveness. Missing the chance to apologise for past hurts, to let go of lingering resentments, to say “goodbye” and “I love you” is a common fear. The family vigil at the bedside often symbolises a good death
And, yes, there are death-bed reconciliations and powerful reconnections between estranged family members.
But for some people dying alone holds no fear, and compulsory visits, when we’re helpless to prevent them, from people we may not like, people we believe have harmed us and are still angry with, may not be what we want for ourselves. We may not want these people near us when we feel vulnerable and helpless. When facing our own fears about death, other people’s wish for absolution may not be our top priority.
When we have the capacity to decide for ourselves who we want to visit us, we can make our own choices.
When, like P in this case, we no longer have the mental capacity to make those decisions (indeed, may not even be aware of who is in the room with us), then those decisions are made for us by others. Perhaps for some of us, what we’re not aware of can’t hurt us – so there’s no problem with this. For others, though, it matters that the end of our lives is in accordance with the values we’ve lived by earlier in our lives – even if we’re no longer aware of ourselves and what is happening around us. That’s why some people write “advance statements”, spelling out what matters to us – to have only vegetarian or vegan food, to have only certain kinds of music played in our room, to attend particular religious services (or none).
As with other elements of planning ahead in preparation for a time when we can no longer make our own choices, we can write down our views about visitors we would (or wouldn’t) like on our deathbeds in an “advance statement”. This can sit alongside all the other information about what is important to us when we can no longer decide for ourselves. For more information about advance statements, see the Compassion in Dying website.
Of course, some of us will die unexpectedly without time to summon those people, and – as we all know from the pandemic – it’s not always possible to have the people we want around us when we want them. But planning ahead can still be useful to inform those who may find themselves making decisions for us in the future. It could have helped in this case.
Not everyone has strong views about who visits them on their deathbed – but some of us do. We can prepare a statement in advance saying that if we can’t make decisions at the time, then “I’d like all my family and friends around me when I’m dying” or “Dying feels private and personal, and I’d like only my partner to be there”. We can say, “Please don’t encourage X or Y to visit” or “I would really like Z to come back from Australia to be with me if she can – but if she doesn’t make it in time, she shouldn’t feel guilty or bad about that”.
There’s also a space on the form to tell the person you appoint with Lasting Power of Attorney what you would like them to do. In this case, P could have written that she definitely did want Ann and Bea and the grandchildren to visit her and that Colin shouldn’t prevent them from doing so. Or that she definitely didn’t want them to visit. Or that she trusted Colin to make the right decision and that if anyone doubted his decision they should know the great trust she had in him.
None of this obviates the need for best interests decision-making on P’s behalf, but it provides guidance (from P herself) as to how to make that decision, and that has to weigh heavily in the balance, whether the decision-maker is a health or social care professional, a family member, an attorney or (if it comes to that) a judge.
As with so many Court of Protection hearings, I come away thinking how much pain could be avoided if only we all planned ahead for possible future loss of capacity.
Celia Kitzinger is is co-director of the Open Justice Court of Protection Project and tweets @KitzingerCelia
[1] All names are pseudonyms. I understand from what was said in court that there is a transparency order forbidding identification of P and her family members in the usual terms, but I have not been sent it.
[2] We are not permitted to audio-record court hearings, so all quotations are as accurate as they can be but are captured by typing as fast as possible while the hearing is in progress (and without shorthand) so they are unlikely to be verbatim.
The image is a pen and ink drawing by Rembrandt (almost certainly of his wife, Saskia) from the British Museum Creative Commons Attribution-NonCommercial-ShareAlike 4.0 International (CC BY-NC-SA 4.0) license.
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