Access to Palliative Care Bill [HL]

Baroness O'Loan Excerpts

2nd reading (Hansard): House of Lords
Friday 14th June 2019 Lords Chamber

[Baroness O'Loan (CB)]

My Lords, I am very pleased to support the noble Baroness, Lady Finlay, for the way she introduced this very important Bill into your Lordships’ House. It is not just about the provision of medical palliative care, which might be the narrow definition of palliative care; rather, it seeks to ensure equal access to the provision of holistic palliative care—psychological support and understanding as well as medication.

I know that the Government have previously said that they are in full agreement with the Bill’s underlying intentions. I hope that they will now be able to accept that it is indeed time, in 2019, to ensure that palliative care, in its widest sense, becomes a mainstream service, rather than something that one might be lucky enough to access. For living with life-limiting and terminal illness is not something that affects the patient only; rather, it has an effect, usually a lasting one, on those who love them, live with them, and walk with them on this difficult, and on occasion even humorous and gentle journey.

I will talk in particular about Clause 1(b), which seeks to establish an obligation to ensure that people have access to appropriate health services, including psychological support for the person and their relatives. Some of those relatives will be very small when they encounter death for the first time. We all know that it is very difficult to lose someone whom we love. Even when we are old and grey, it is difficult and we mourn—and mourning and grief stay with us to some extent for the rest of our lives. It can have a very significant impact on our lives. For a little child, death can not only rob them of the mother, father, sibling or relative, but in so doing also rob them of the fullness of their future.

When a little child loses a close relative, perhaps a parent, a sibling or a much-loved granny, the loss is compounded by so many things, which those who really want to care for them—their carers, the parent perhaps, older siblings, aunts and uncles, who are mourning too—may not recognise. They may not have the understanding of the impact of grief on a little child until great damage has been done. It is often not that they are neglecting the child in any way; rather, a combination of circumstances may lead to an inability to recognise what the child needs and to provide it.

The Royal College of Psychiatrists has identified some of the relevant issues and some of the things that we need to think about. How close is the child to the person who died? How involved was that person in their lives? Was the death expected or sudden? Was it traumatic? How did those around the child respond? Adults have a way of dealing with grief that is perhaps different from the ways in which children react. Even little babies know loss—they know that their mother or father is no longer there for them. They do not often know why, and people describe the situation in words that they do not understand and involve comprehension of major concepts that may be beyond the child, such as the fact that the person they love is not coming back. That is hard for us to understand; for a little child it can be totally incomprehensible.

I think of one little boy I knew who was two and a half when his father died. He used to sit every day waiting for his father to come home. After his father died, he continued to sit on the doorstep with his big golden Labrador, waiting and waiting. His father never came home, and he had been told that his father was not coming home. He just withdrew into himself as he sat on that step and he stopped talking completely. That led to a need for a more therapeutic service. If children can be helped to talk and to express themselves, perhaps through play, they can cope better and are less likely to have emotional disturbances later in life.

One of the things that is very important for a child, because death is such a difficult time, is what happens at a funeral. People often do not know: should they keep the child out, or try to pretend that life is going on as normal? There are those who can help. A holistic palliative care system would provide that.

We know that children get very angry about death. They get angry because the person they have lost is essential to their sense of safety and stability. They can become aggressive, even in play. They can become irritable or inconsolable. They can have nightmares. They can be worried because they have been up and down to a hospital to visit a sick person. Hospitals are not places for small children, who are, for the most part, visiting sick people. They may even be afraid that the surviving carer will die, too. That can be a very real fear, but they are afraid to articulate it, lest it happen. They may be sad and unable to articulate their sadness without help.

Children may believe that they caused the death. They often take responsibility for things that happened for which they have no responsibility. Like the noble Baroness, Lady Hamwee, I do not easily move into the personal, but in my case, at the age of 13, I was sent to get new medication from the chemist for my father, who was very sick. I got the medication and brought it home. He used it, had a massive heart attack and died. My conclusion was that by bringing the new medication into the house I had caused his death. I could not talk to anyone about it because I needed to support my mother. How do you put this sense that you have caused something into words? You do not want to upset people but you are tormented by what is going on in your head. There are those who can help people in this situation, who can provide support through illness and dying and into the future—people to whom the child can speak freely, and who have the training and the expertise to help them to articulate and to work through what has happened. So many children currently do not get help.

Some 3.5% of children aged five to 16 have experienced the death of a parent or sibling. Bereavement has such an impact on their social, psychological and educational outcomes. Akerman showed in 2014 that most children experience negative impact and that childhood bereavement can have an impact up to the age of 30, although there are limitations on that when family background is taken into account. But there is evidence that specialist interventions and programmes can be helpful. It is reported that even those not exhibiting clinical levels of distress can benefit from longer-term programmes that normalise their grief and strengthen their coping capacities.

The most effective way to do this is to adopt a holistic approach that attempts to strengthen the protective factors in a child’s life, supporting not just the child but the surviving parent and working to strengthen communication and warmth in the family. It can seem very mundane—but there is nothing mundane about a home that has lost a loved one. Those who really want to help their children might be in a very difficult place. Someone who has worked with a child before death, and helps them begin to understand what has happened after death, will help to assuage the anger which, if unacknowledged, may lead to poor performance at school, anti-social behaviour and withdrawal into other problems.

What the noble Baroness, Lady Finlay, seeks for the child relatives of those who need palliative care is not unachievable. In the end, research shows that it may help prevent situations arising which might cost infinitely more in terms of response. I am happy to support the Bill and I thank the noble Baroness for it.