Sheela-na-Gig aka Jeanne Rathbone

Proper Palliative Care means Assisted Dying for terminally ill people who want to take control over their life and death

Posted in Assisted Dying is part of true palliative care by sheelanagigcomedienne on September 17, 2015

Demo aas dying closerJeanne at demo

Those of us pressing for a much needed change in the law for the humane treatment of terminally ill people were out in force and represented the 80% of people who are in favour of the need for parliament to legislate as things are unfair and muddled now. The result was so disappointing.

I unexpectedly met some people I knew at the demonstratio One was Allison the mother of a baby I named called Arno. I also got into conversation with a lovely Irishman suffering from motor neurone disease who was there with his wife and son.

Dignity in Dying advocates a change in the law on assisted dying. We believe that, subject to strict upfront safeguards, the law should  allow terminally ill, mentally competent adults to request life-ending medication from a doctor. The dying patient would then have the choice to self-administer that medication at a time that was right for them.

A change in the law on assisted dying would not lead to more deaths, rather it would lead to less suffering for those dying people who want the choice to control how and when they die. This change is reflected in Lord Falconer’s Assisted Dying Bill which was first tabled in the House of Lords in June 2014. Falconer

Lord AveburyLord Avebury who is an active supporter of the bill said: I have been in Parliament for over fifty years and have worked on many important issues. To have the opportunity to legalise assisted dying is one of the most crucial parts of my political career. Due to my health I am sometimes unable to participate in certain debates that go on late but the Assisted Dying Bill is an obvious exception!
I am pleased that it has so far been a great success; it was passed unanimously through Second Reading, and was constructively amended during the first day of Committee Stage. The House of Lords received much praise for the way it has so far conducted the debate, and my colleague Lord Falconer quite rightly won the Spectator’s 2014 Peer of the year award.
I attended an excellent panel discussion that was organised by St Luke’s Church with Lord Falconer and the wonderful children’s author Judith Kerr last year and it was attended by Jane Ellison and I was hopeful that she would support the bill but alas.The tiger who came to teaJudith Kerr

The Law that was introduced by Bob Marris as a private member’s bill would if enacted:

Result in fewer dying adults – and their families – facing unnecessary suffering at the end of their lives, subject to strict upfront safeguards, as assessed by two doctors.
Bring clarity to an area of the law that is currently opaque and thereby provide safety and security for the terminally ill and for medical professionals.
Neither legalise voluntary euthanasia, where a doctor directly administers life-ending medication nor act as a slippery slope to do so.
Protects anyone who doesn’t have a terminal illness, including elderly and disabled people, by not in any way affecting the law that makes it a criminal offence to assist ending their lives.
Above all it will give dying adults peace of mind that the choice of assisted dying is available if their suffering becomes too great for them in their final months of life.
Without a change in the law, terminally ill patients will continue to take decisions without adequate safeguards, whether by travelling to Dignitas to die, ending their lives themselves or being illegally helped to die by doctors.

The T shirt image

People who are terminally ill and dying who are under the care of a hospice or Mac Millan Nurses at home have access to  morphine that they are given to relieve their pain and have better palliative care precisely because of the place where they are dying and recognition that their are dying.

But true palliative care for the dying should include self administered mediation.

Palliative care: The last hours and days of life – UpToDate

Patients in the last days/hours of life often have unrelieved physical suffering, as well as significant emotional, spiritual, and social distress. Recognizing that a person is entering the dying or terminal phase of their illness is critical to appropriate care planning, with a shift to comfort care. 

Despite the benefits of palliative and hospice care, many patients in the terminal stages of a serious life-threatening illness die in settings where they do not receive care designed to address suffering in the last hours of life. Recognizing that a patient is dying before his or her last week of life is associated with fewer deaths in the hospital and more deaths in a preferred place. Patients enrolled in hospice programs are also less likely to die in the hospital.

With the exception of patients who have a precipitous, unexpected fatal event (eg, massive hemorrhage), certain signs are usually present when patients are within days of death. A checklist for identifying actively dying patients is presented in a table, and is applicable to a variety of clinical conditions

Once a patient has begun the transition to the actively dying phase, the goals of care should shift toward maintaining physical comfort, and alleviating emotional, spiritual, and social distress for the patient and family. Among the issues that are important to resolve are preferences for location of care and preferences for limits on invasive or aggressive resuscitative therapies that often are ineffective in a patient with end stage disease.

Discussions about cardiopulmonary resuscitation (CPR) are of vital importance for patients with a terminal illness, and preferably these discussions should take place prior to the active dying phase. For patients who are actively dying from a terminal illness, CPR constitutes a non-beneficial or harmful and inappropriate medical treatment. Nonetheless, it may be an intervention that is expected by patients and their families, and as such, it should be addressed through proactive communication.

People are not getting the humane palliative care they WANT. I hear the distressed stories all the time from families. We have lost this opportunity and now, it seems, that it will be through the courts that progress will be made because the out of touch, paternalistic and craven MPs who voted against this including many Labour ones.


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