Access to Palliative Care Bill [HL]

Baroness Hollins Excerpts

Friday 23rd October 2015 Lords Chamber

[Baroness Hollins (CB)]

My Lords, I congratulate my noble friend on introducing this very important and timely Bill.

I will speak mainly about mental health and well-being for people who are terminally ill. To achieve a comfortable death, it is imperative that psychological distress is understood and attended to as well as treating any physical symptoms. Parity of esteem for physical and mental disorders was mandated in law for the first time in the Health and Social Care Act 2012 and it applies at the end of life, too. Depression, which can be defined as pervasive low mood lasting more than two weeks, is a common co-morbid condition of pain and advanced illness. A systematic review of the evidence in 2006 found that up to 80% of people with cancer experienced clinically diagnosable depression, as did up to 70% of people with chronic lung disease. A considerable proportion of such mental illness remains undiagnosed and untreated, thus pointing to the need for an integrated psychiatric service in hospice and palliative care teams. Another study published in 2014 found that out of 444 advanced cancer patients in the study, 160 patients reported moderate or severe depression, often linked to anxiety. Of these 160 people, 56% showed a significant improvement in their anxiety or depression after just one supportive palliative care consultation.

Three barriers to excellent psychiatric care at the end of life have been described by the Academy of Psychosomatic Medicine: first, the challenge of diagnosing mental disorders in the presence of serious physical illness; secondly, confusion about the threshold of clinical significance—when is distress part of a process of normal psychological adjustment and when is it pathological?—and thirdly, the commonplace but unnecessary nihilism about the potential benefit of treatment for mental disorders at the end of life.

I suggest that psychiatric teams with a specialist understanding of mental health in palliative care have a crucial role to play in the provision of truly holistic end-of-life support. Research points to stigma as a barrier to diagnosing depression. One paper reported that,

“patients were ashamed to admit to psychological symptoms of depression because of their fear about the stigma attached to it”.

Stigma leads to both a reluctance by individual patients to seek help and a reluctance by healthcare professionals even to broach the subject. It will be through effective training in communication and in diagnosing mental illness that these barriers will be broken down, and psychiatrists need to be involved in supervision and reflective practice with the multidisciplinary team.

The Oxford Handbook of Psychiatry in Palliative Medicine, published in 2009, described the multifactorial function of the psychiatrist: first, as a clinical consultant contributing to direct patient care, liaising with other palliative care clinicians and working with families; secondly, as an educator to leverage knowledge about mental health issues and teach communication skills when difficult dynamics are involved; and, thirdly, as an investigator undertaking and supervising research about what works best at the end of life.

My noble friend’s Bill explicitly includes a clause specifying that Health Education England should ensure that health and social care providers deliver good- quality training to all healthcare professionals in four specified fields related to palliative care: pain control; communication skills; the appropriate use of the Mental Capacity Act; and how to support families and carers of people with palliative care needs. I would ask my noble friend if the Bill’s provisions adequately include a mandate for training in mental health and for the provision of specialist mental health care, and whether her intention would be to emphasise the importance of parity for mental and physical health care in guidance.

The Bill is not just about care for the dying person. The legacy of a traumatic death can have lifelong negative repercussions for those left behind. The Childhood Bereavement Network estimates that around 33,000 children under 18 are newly bereaved every year. Being open about death and allowing them to understand what is happening can reduce otherwise negative sequelae. My own research with Dr Abdelnoor found that, compared with their peers, parentally bereaved children scored an average of half a grade lower in their GCSEs. Other researchers found that bereaved children are one and a half times as likely to have a mental disorder and three times more likely to have physical health symptoms in the clinical range.

As I said in this House yesterday, access to palliative care services does not require just geographical equity but equal access for all individuals in our society. People with learning disabilities, children and individuals with severe mental illness may all need reasonable adjustments to be made to their care and treatment. My research with people with learning disabilities has shown that collaboration between services is the most effective way to ensure that they receive satisfactory palliative care. The problem is not people’s inability to communicate but our inability to understand their way of communicating. We know that in general health services, people with learning disabilities die earlier than they should and face disproportionate barriers to care. Unsurprisingly, the Confidential Inquiry into Premature Deaths of People with Learning Disabilities found problems in advance-care planning, poor adherence to the Mental Capacity Act, and carers not feeling listened to. These areas are also identified in the Bill as needing improvement in end-of-life care. If we could get it right for people with learning disabilities, we would probably get it right for everyone.

I was grateful to the Minister for his response to yesterday’s Question for Short Debate in the name of the noble Lord, Lord Farmer, and his announcement of the planned thematic review by the CQC of inequalities in end-of-life care. Such initiatives will help improve services but legislation is needed to make a significant step change in the availability of adequate palliative care services. I support the Bill wholeheartedly.