Nat S Ford (natf) wrote,
Nat S Ford
natf

My answers, for my records.

APPG on Choice at the End of Life. – Bill consultation
The form wording and my answers copy/pasted for my records:Consultation questions

The Bill is a draft and will be reviewed and revised in light of the responses we receive to this consultation. Our aim is to develop a process to allow dying, mentally competent patients choice, whilst improving patient safety.


The draft Bill is based largely on the recommendations of the Commission on Assisted Dying. The Commission’s report followed a research process which included over 1,200 responses to its call for evidence, research visits to four jurisdictions that permit assisted dying in various forms, as well as original commissioned research.

You are invited to respond to this consultation by answering the questions in the consultation and by adding any other comments that you consider appropriate. You can respond either using the form included on the downloadable consultation document, or via this website using the form below.
Introductory questions

If adequate safeguards can be found to allow assisted dying (assistance to die for terminally ill, mentally competent adults only) and no healthcare professional is obliged in any way to assist a patient to die, would you support a change in the law on assisted dying?
* Yes
No
Don't know


The intention of the proposed law change is to ensure that patients at the end of life have choice over the manner and timing of their death, and that all patients are properly protected against potential abuse.

Question 2

Do you think upfront safeguards before an assisted death (as set out in the draft Bill) or retrospective safeguards after an assisted death (under the current law) are most effective for protecting patients?
* Upfront safeguards
Retrospective safeguards
Don't know

- No comment.

Eligibility criteria and assessment

The Bill sets the following criteria for assisted dying
To be eligible a person must:

Be terminally ill with a prognosis of twelve months or less to live
Have the mental capacity to make decisions about their life and death (mental capacity is when a person is able to weigh up all relevant information to make a decision, and understand the consequences of their decision)
Have a clear and settled intention to die
Be an adult (aged 18+)
Have been resident in England and Wales for at least the previous year

Question 3
Should any other additional eligibility criteria be added?

* Yes
No
Don't know

- Have a condition (e.g. multiple sclerosis) that is degenerative and progressive and that is eroding quality of life. We should be allowed to die when we consider that we no longer have a quality of life that we deem sufficient. We should be able to gain physical aid to die if we are physically unable to make the necessary physical motions.


The Bill defines terminal illness as an inevitably progressive condition which cannot be reversed by treatment, and from which the patient is reasonably expected to die within one year. This is based on the recommendation of the Commission on Assisted Dying. Allowing patients to start the process when they have a prognosis of up to one year gives them time to start having conversations with their doctors and those close to them, and go through the checks and safeguards in enough time so that the process is accessible before they become too weak to manage it.

We have also considered whether assisted dying should be available only to patients with shorter prognoses (life expectancy). Whilst doctors tend to be overoptimistic in giving prognoses to terminally ill patients, prognoses tend to be more accurate when the patient is closer to death.

One suggestion is that assisted dying should be available to people with an inevitably progressive condition which cannot be reversed by treatment, and from which the patient is reasonably expected to die within six months. Another suggestion is that a patient could make a formal request for assisted dying and go through all the safeguards when they are terminally ill with a prognosis of one year, but that they could only receive the medication from their doctor when they have a prognosis of three months.


Question 4

Would you prefer assisted dying to be available to people with a prognosis of:
One year
Six months
Three months

- n/a
- It should be available on a quality of life basis, as it is for pets. We should not give our pets more rights that we have ourselves and we let pets die when they have reduced quality of life but only allow ourselves to die when terminally ill.


A patient would have to have mental capacity, and have made a settled, informed and voluntary decision in order to be eligible for an assisted death. These criteria would be assessed:

By both doctors when the patient makes their formal request
By relevant professionals where either doctor has any doubts about a patient’s eligibility (for example if there was evidence the patient might be suffering from depression)
By both doctors ensuring the patient understands the palliative care, symptom relief and other treatments available to them
By the use of the cooling off period so that a patient cannot have an assisted death immediately after having been assessed as eligible
By the attending doctor or nurse conducting another check of the patient’s capacity when the patient asks them to deliver the life-ending medication

Question 5

Are you satisfied with the arrangements proposed in the Bill for assessing these eligibility criteria? (We would welcome any suggestions for additional arrangements for assessing these eligibility criteria).
Yes
* No
Don't know

- Quality of life should be a criterion, not merely prognosis.


The Bill sets out that both doctors must inform the patient of the palliative care and support options available to them. It is envisaged that in most cases at least one of the two doctors involved will have experience of providing end-of-life care in the community and in most cases a patient with a life expectancy of a year or less will have some experience of end-of-life care or specialist palliative support.

Question 6

Should it be a requirement that one of the two assessing doctors has a certain level of knowledge and experience of end-of-life care?
* Yes
No
Don't know

- So, what you are saying is that someone who wants to die is lectured about the alternatives by two doctors. THAT helps. NOT. Way to make things worse for the patient!


The Bill proposes a waiting period of fourteen days from the patient's declaration taking effect (after both doctors have agreed that they meet the eligibility criteria) before the patient can access the life-ending medication. In cases where the patient has life expectancy of one month, the waiting period drops to six days. The purpose of the waiting period is to give the patient time to reflect on their decision – it is a 'cooling off' period. The Bill also makes clear that at any stage in the process a person can revoke their request for an assisted death.

Question 7

Are you satisfied with the proposals for the waiting/’cooling off’ period?
* Yes
No
Don't know

- No comment.

Responsibilities of healthcare professionals

The proposed law change puts forward an assessment model led by doctors.

Question 8

Are you satisfied with the proposal that two doctors, acting independently of each other (and referring the patient for further assessment by other professionals where necessary), assess the patient’s eligibility for assisted dying?
* Yes
No
Don't know

- Better safe than sorry, I suppose, but this still feels like the patient being lectured about what to do with their own life.


Under the proposed law, the attending doctor (or another doctor or nurse they have authorised) would deliver the life-ending medication to the patient, check their mental capacity, and stay on the premises until the patient died. The purpose of the doctor or nurse staying on the premises is to provide support to the patient and those close to them, and ensure the medication and any medical devices are set up appropriately. However, there is a concern that this might be intrusive for patients (even if the doctor or nurse is not in the room when they self-administer). There is also a concern that requiring the presence of a doctor or a nurse through the entire process may not be practical, given the many other demands on doctors' and nurses' time.

Question 9

Should the doctor or nurse remain on the premises until the patient dies?
Yes
No
* Don't know

- That should be up to the patient. The patient's end-of-life decisions should be all their own.


The Bill proposes an assessment model of safeguards led by doctors, based on the recommendations of the Commission on Assisted Dying. However, in the past other models of assessment and safeguarding have been proposed, for example a legal model whereby a patient is assessed for eligibility by a tribunal or court

Question 10

Would you prefer a doctor-led or legal-led (or another) assessment and safeguarding model for assisted dying?
Doctor-led
Legal-led
* Another model
Don't know

- Patient-led

Accessibility

It is vital that as well as providing robust safeguards to protect people who may be vulnerable, any change in the law should be accessible to the people who need it: terminally ill adults who are suffering and want to be able to control the manner and timing of their death.

Question 11

Do you have any suggestions for how the process could be made less onerous for patients, whilst maintaining their safety?
* Yes
No
Don't know

- It should not only be available to terminally ill patients.


The Bill proposes that the patient should be assessed by an attending doctor who will often be the patient's GP or one of their specialists and a second, independent doctor.

Question 12

Should it be the patient’s responsibility to find a second doctor, should the attending doctor be able to refer the patient to an independent doctor or should there be a clear mechanism for patients to find an independent doctor?

- There should be a clear mechanism. What happened to the multiple-choice answers on this question?

Monitoring

The Commission on Assisted Dying recommended that a monitoring commission should be established to monitor assisted dying practice and investigate any cases of potential non-compliance or malpractice. It is extremely important that these monitoring and investigatory functions are fulfilled but it is not feasible for a Private Members Bill to establish a new non-departmental public body of the complexity of a commission. Therefore the Bill proposes that monitoring and investigatory functions should be fulfilled by a Monitoring Inspectorate within the Department of Health.

Question 13

Are you satisfied that the functions of the Monitoring Inspectorate are appropriate?
Yes
* No
Don't know

- This should be an independent body with patients on the board.

Question 14

Do you have any suggestions as to any existing organisations that would be better suited to take on these functions than the proposed Monitoring Inspectorate?
* Yes
No
Don't know

- Dignitas or similar.


The Bill also proposes that alongside the monitoring and evaluation of the Monitoring Inspectorate (based on the analysis of evidenced declaration forms and other paperwork required from pharmacists and doctors), the Registrar General should produce an annual report on assisted deaths based on the cause of death recorded on death certificates. This would provide important information on the underlying illnesses, and other characteristics, of those choosing assisted deaths.

Question 15

Are you satisfied with this proposal?
Yes
No
* Don't know

- No idea to be honest. And I will not care once allowed to die if that is what I decide.


Section 13 of the draft Bill includes a clause that would give Parliament a formal, scheduled opportunity to review and potentially repeal the law 10 years after it came into force. This is known as a 'sunset clause'. There is an argument that a 'sunset clause' is unnecessary, as Parliament is always at liberty to repeal or amend laws. An alternative argument is that the 'sunset clause' is an important safeguard to ensure Parliament scrutinises the application and effects of its laws.

Question 16

Do you support the inclusion of a ‘sunset clause’?
Yes
No
* Don't know

- I won't care once allowed to die if that is what I decide. Then again, if the law is taken away then people will have this basic right, one that we afford to pets, to be taken away from them.

Other

The draft Bill proposes that a Code of Practice should be
published covering:

the assessment of whether a person has a clear and settled intention
to end their own life, including:
assessing whether the person has the mental capacity to make
such a decision;
recognising and taking account of the effects of depression or other psychological disorders that may impair a person's decision-making;
and
informing a person of the treatment and end-of-life care options
available to them and of the consequences of deciding to end their
own life;
and any other matters as needed relating to the operation of the law

Question 17

Do you have any comments on the suggestions of areas to be covered by the Code of Practice?

- The patient's own definition of 'quality of life' needs to be honoured as well as any living will and DNR.


We envisage that training on end-of-life care, capacity assessment and other relevant issues would be made available to doctors and other healthcare professionals who might be involved in assisted dying. We envisage that support would be made available to doctors and other healthcare professionals involved in assisted dying requests.

Question 18

What training and support should be available to doctors and other healthcare professionals in the event of a change in the law on assisted dying?

- Counselling, definitely. Training in the wording of the law. Bedside-manner training and training in how to see things from the patient's side.

Question 19

Do you have any other comments on the draft Bill?

- No comment.

Question 20

Do you have any comments on the Declaration form (Schedule 1)?

- No comment.
Tags: dignity-in-dying, ms
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