Terminally Ill Adults (End of Life) Bill (Twelfth sitting) Debate
Full Debate: Read Full DebateNeil Shastri-Hurst
Main Page: Neil Shastri-Hurst (Conservative - Solihull West and Shirley)Department Debates - View all Neil Shastri-Hurst's debates with the Ministry of Justice
(1 day, 23 hours ago)
Public Bill CommitteesIt is a pleasure to serve under your chairmanship, Mr Efford. I start by gently pushing back on what my hon. Friend the Member for East Wiltshire said about this being a fork in the road. I do not see the Bill giving patients that ultimate option. They have the choice to opt for an assisted death while continuing with their palliative care all the way along; in fact, they could then decide that they did not wish to have an assisted death, although that opportunity would be open to them. I do not think that the choice is the binary one that has been presented; I am sure that was not the intention, but I just wanted to gently push back.
Before the hon. Member for Solihull West and Shirley continues, I should point out that when Members say “you” or “your” they are referring to me in the Chair. It has happened a couple of times. We all do it—we all make mistakes—but please make the effort not to use “you”.
I am grateful to you, Chair, and to my hon. Friend the Member for Reigate for her intervention. She is right: it is absolutely critical that patients are given the full information in order to make an informed choice. I do not think any of us would disagree with that. But actually that goes entirely with the wording of the Bill as it stands. The hon. Member for Stroud has already highlighted the relevant provision—clause (4)(4)(c), which states that the initial discussion must explain and discuss with the patient
“any available palliative, hospice or other care, including symptom management and psychological support.”
Therefore a requirement to have those discussions is already stipulated in the Bill.
My hon. Friend the Member for Reigate makes an interesting point about who has that discussion. But are we saying that only a palliative care specialist is capable of having those discussions? Of course, those who work in the field are highly trained individuals, but we must not be unfair or do a huge disservice to other healthcare practitioners who provide excellent palliative care in this country.
My father was a general practitioner for more than 40 years. He provided a huge amount of palliative care throughout his career, both in the community and in hospices. Look at Marie Curie’s own website, which talks about the provision of palliative care in this country and very much about primary care provision and secondary care provision. Within secondary care, of course, are the specialists—clinical nurse specialists, occupational therapists, physiotherapists; I could go on. But of course, as the hon. Member for Stroud will know particularly well given his former profession, there is another body of general practitioners, community nurses, district nurses, advanced nurse practitioners, pharmacists and social workers, who are all involved in this process.
I think the amendment comes from a good place; at first blush, I can see absolutely where it is coming from. But despite that, it leads us down the bureaucratic thicket that Chris Whitty spoke about.
Professor Sleeman’s evidence to me around palliative care says:
“‘Essential’ services are not provided: A good example is that our study of community services that are provided to people with advanced illness found that just 1 in 3 areas consistently provides a 24/7 palliative care telephone advice line—even though this has been a NICE recommendation since 2011…Another example is that the most recent NACEL audit (National audit) found just 60% of hospitals provide a 7 day face to face palliative care service— even though this is also a NICE recommendation, and was a recommendation in the One Chance to Get it Right report (that came out of the Neuberger review—around 2015.)”
I appreciate the hon. Gentleman’s important point, but does he agree that not every GP is able to keep abreast of all the palliative care advances being made, which palliative care consultants would know about?
I am grateful for the hon. Member’s intervention, which leads on to the point I was going to make. We are getting bogged down in nomenclature about what speciality is involved when this is actually about training. It is about whether the individual having the conversation has the requisite skills to have a meaningful conversation. Clauses 5(3)(a) and 8(6)(a) stipulate that the co-ordinating doctor or independent doctor
“has such training, qualifications and experience as the Secretary of State may specify by regulations”.
That is the key part. This is about ensuring that people having incredibly sensitive, challenging and difficult conversations with patients about choices available to them at the end of life have the requisite skills and knowledge to do so. That may not be applicable to each and every general practitioner, but those having those conversations should have that knowledge.
My hon. Friend is making a thoughtful speech, but I am concerned that he suggests that the skills required are simply the skills of conversation. The skills required are the skills to understand the patient’s condition and lay out very clearly to them their prognosis and the treatment options available to them.
With all respect to my hon. Friend’s father and other GPs, I cannot accept that every GP is fully qualified to understand the dying trajectory of the patient before them—perhaps my hon. Friend will confirm his belief that that is so. If that is true, what is the point of the palliative care profession? We have GPs already and are now introducing psychiatrists and social workers into the mix; I do not understand why on earth it should be regarded as unnecessary to include professionals in palliative care—the key skill that we all recognise as so important in this space. Why not?
I fear that my hon. Friend may be oversimplifying what I was saying. Perhaps I was not clear enough, so I will elucidate. I was certainly not suggesting that the required skills were merely those of being able to have a consultation and a conversation. I was talking about having the skills to have the information that needs to be imparted and the knowledge that underpins that and being able to articulate that within a consultation. It is a much wider picture than just having the communication skills—it is having the knowledge that underpins that. I am saying that that is not necessarily the domain only of someone who works in palliative care. There are a number of specialists who work within this field—it is a multidisciplinary field—and they all bring their expertise. The issue is about ensuring that anybody having these conversations has the knowledge base to conduct them properly.
I will try to make some progress. I want to move on to the other point I want to address, which is around bogging down the whole process with layer upon layer of bureaucracy. We are talking about a relatively small group of patients who are in the last six months of life and are then battling against the system that is meant to be helping them. If we put in layer upon layer and hurdle upon hurdle, it will become a much more difficult system for people to navigate. That does not mean that it would be a less robust system, but it would be a more difficult system. We are trying to make life easier, not harder, for those patients. This comes back to the central point that Professor Whitty made in his evidence about overcomplicating Bills: we overcomplicate Bills out of good intentions, but rarely make the safeguards more robust—in truth, we make them less safe.
I want to go back to the point about making the Bill more complicated by putting layer upon layer on it. My hon. Friend the Member for Bradford West spoke about health inequalities and how not everyone is given the same advice to the same level. If we were to introduce a palliative care specialist we would guarantee that everybody was given the same advice and information. We could therefore help reduce the health inequalities and inequalities of access to information that we know exist in our healthcare system.
The hon. Member makes a valid point. The reality is that, regardless of specialty title, there will be individuals who are better placed to have certain conversations and discuss certain issues than others. I look back at my own clinical practice: some colleagues would have had a better bedside manner than others, for example. I do not think this comes down to the name of the specialty; it comes down to the underpinning skills and knowledge. That is the point I am trying to make.
We can get bogged down by saying, “Everybody has to see a palliative care specialist”. Of course, that is open to people: if they wish to have a referral to a palliative care specialist, they can see one. However, as the hon. Member for Stroud said, some people may not want that. We cannot be removing the autonomy of patients when their decision-making process is that they choose not to engage with that. They may want to speak to their GP because they have had a relationship with them over 30 or 40 years and have the patient-doctor relationship that is so important when dealing with these important discussions. Perhaps they would feel less comfortable having that discussion with a clinician they had just met for the very first time.
I am grateful to the hon. Gentleman, who is being generous with his time. I want to bring in something that is very real for me at the moment. As a result of a hit and run, I have nerve pain for which I receive steroid treatment. I had treatment a couple of weeks ago and suffer from pain at the moment. My doctor is not a specialist in nerve pain; he has to refer me to a musculoskeletal service and I have been waiting for over a year for surgery.
I mention that because we already have care pathways for specialisms such as nerve pain. My hon. Friend the Member for Spen Valley referred earlier to somebody who had cancer and it was a horrible experience. I would like to have thought that in that instance they would have been offered tube feeding. However, to go back to the point, the GP does not necessarily have the skillset. My GP, and there are lots of them in that practice—it is a brilliant practice at Kensington Street—has to refer me on. That is the point of the Bill. The amendment speaks to developing an established care pathway. If we are to pass this legislation into law, we must ensure that there is a care pathway to explore palliative care.
At the moment clause 4(4), which my hon. Friend the Member for Stroud referred to earlier, says this has to be explored in the wider term. However, what that looks like is not a specialty. For some people with cancer and palliative care needs and six months to live, their trajectories could be—
I am grateful to the hon. Lady for her intervention. She makes a number of points. First, may I say that I am sorry about her own health issues? I think she hit the nail on the head when she said that the GP may not be able to offer that service. For instance, take shoulder injections. Some GPs can do a shoulder injection with steroids; some will refer to the hospital for it. My father was a GP who could do them, but others would have referred to me when I was an orthopaedic surgeon and I would have done them in clinic.
This will not be right for every single general practitioner; the issue is about having a cohort of general practitioners who have the skill and ability, and about having a flexible system that works for patients. It all circles back to the training point. The individuals who do this have to have the requisite skills. That, of course, will be set down in regulation.
The other point that the hon. Member for Bradford West made is that clause 4(4)(c) says that any clinician having that discussion must be able to explain
“any available palliative, hospice or other care.”
It therefore follows that if the clinician is unable to do that because of a lack of skill or knowledge, they should refer on to somebody who can do it. That is the fundamental principle of having informed consent and discussion with patients. If a clinician cannot provide that information, they ask for somebody who can. That was not uncommon in my practice: if I had something that was outside of my area of knowledge or specialist interest, I would refer it to a colleague. That is how those conversations take place.
The Bill as it stands allows that flexibility for patients without confining them. But it gives them the very welcome option of a palliative care referral; that is entirely open to them—it is not closed off from them. Of course, they will be fed into the palliative care route anyway, following the trigger of their terminal diagnosis. They will be going on the journey, and having further conversations around their end of life care. Those are the points that I wish to make.
A thought has suddenly been triggered: we are talking as if the provision of this service is undertaken by the NHS, but what are my hon. Friend’s thoughts if the service were being delivered privately? How does that interact with his automatic assumption that there would be a referral to a palliative care specialist?
I do not think that offends the principle at all. Whether I was working within the NHS or the private sector, if a patient requested an onward referral to a different specialist, I would action that. If I did not have the requisite skills or knowledge, or felt that they would be better served by a different speciality, I would refer on to another clinician. I do not see how it would be treated any differently in the NHS than it would be privately. I am afraid that I do not follow that argument.
It is a pleasure to serve under your chairship, Mr Efford. I will address the amendments in two different ways. I will start by looking at the technical issues around amendment 281, and then I will look at why I believe, as other colleagues have said, that the amendments are not necessary given what already exists both in the Bill and in terms of good practice in our health service.
First, I worry that amendment 281 will not have the effect that my hon. Friend the Member for York Central (Rachael Maskell) intends. Clause 1(2), to which the amendment relates, provides an overview of the other clauses in the Bill, and therefore cross-refers to sections 5 to 22. Clause 1(2) does not impose duties on persons in and of itself. The duties are set out in the later clauses to which it refers. Adding an additional subsection to clause 1, as proposed by the amendment, would not result in a requirement that the person must meet a palliative care specialist. That is a technical detail to reflect on.
In addition, the term “palliative care specialist” is not a defined term. Palliative medicine is a designated speciality of the General Medical Council, and a doctor can apply to be entered on to the GMC specialist register for the speciality provided that they have the specialist medical qualification, training or experience. However, the current wording of the amendment means that it is not clear whether it is seeking to require the person concerned to meet with one of those specialist doctors, or whether a meeting with another medical professional specialising in palliative care—for example, a specialist palliative care nurse—would suffice. There is no equivalent specialist register for specialist palliative care nurses. It is a technical issue, but an important one.
I also point out that my hon. Friend the Member for York Central has put an incorrect explanatory note with the amendment, which refers to terminal illness. That might just be an error, but I wanted to point that out.
Coming on to the broader grouping of the provisions: as has been said by colleagues, the amendments are tabled with really good intentions by someone who cares passionately about the palliative care sector. But they are not necessary given the process that is already set out by the Bill. Both doctors already have to discuss all treatment options, and must make a referral if they have any doubt about the diagnosis. It is very clear from clauses 4 and 9 that both the co-ordinating doctor and the independent doctor must discuss all treatment options with the patient, so they will have all the options laid out before them. That is really important because we have to think about what happens in reality. This initial discussion, in many cases, may actually take place with a palliative care doctor, and in many cases it will be highly likely, given the nature of the conditions we are talking about, that the patient may already be receiving treatment or advice from a palliative care team.
We seem to have created a narrative where this conversation is happening in isolation. Actually, as other colleagues have alluded to, we have a patient-centred approach in our healthcare. This person does not just suddenly arrive and have this one random conversation. I am sure medical colleagues will correct me if I am wrong, but if a doctor is dealing with a condition of which they have very limited knowledge, one of the first things they would do would be to refer to a specialist.
As is covered in clause 9(3)(a), if the doctor has any
“doubt as to whether the person being assessed is terminally ill,”
they must
“refer the person for assessment by a registered medical practitioner who holds qualifications in or has experience of the diagnosis and management of the illness, disease or condition in question;”
Clause 9(2)(a) also states that both doctors must assess the patient’s
“medical records and make such other enquiries as the assessing doctor considers appropriate;”
They can speak to anyone they want to, and they would in reality—of course that is what they would do. They would not sit there and think, “Oh, I don’t know enough about this condition so I will just keep going.” They would refer to specialists.
It is also really important to acknowledge what goes on at the moment. I was looking at some research last night: NHS England also has comprehensive guidance on personalised palliative and end-of-life care through a comprehensive personalised care model. None of this stops with the introduction of assisted dying as a choice for people. It would continue to happen. Patients are already getting that really good level of care.