Claims about Oregon clarified
THANK you for publishing my letter of 15 April 2018, responding to misleading claims made about Oregon. I am writing today to respond to similar claims made by Baroness Ilora Finlay and to clarify concerns from the Churches in Guernsey published on 24 April.
Again, I am Ann Jackson. I have worked in end of life care for more than 30 years. I was the CEO of the Oregon Hospice Association, now known as the Oregon Hospice and Palliative Care Association, between 1988 and 2008. I was its spokesperson before, during and after the public debates over the Oregon Death with Dignity Act. My role then, and now as an unaffiliated and independent authority, has been to write and present, openly and honestly, fact-based information about all end-of-life choices.
I was among those in Oregon who welcomed the House of Lords select committee on their visit and I have a copy of their report. I have great admiration for Baroness Finlay and her contributions to palliative care. I have had the opportunity to visit with her – we share many values.
However, my experience in the past 30 years has taken me to a different place. I have no reason to apologise for Oregon. I am proud that I have played a role in making sure that Oregonians, who voted for Death with Dignity twice, need not choose between assisted dying and palliative care, but can have both.
I voted against it twice. I strongly believed, as Baroness Finlay does now, that assisted dying was unnecessary. Moreover, I strongly believe now, as does Baroness Finlay, that good palliative care can indeed ‘melt away’ a desire to hasten death for the vast majority of people who are facing a life-threatening illness. Laws allowing assisted dying are a last resort for a small minority.
Improved conversations about end-of-life care in Oregon do not mean that people must have access to assisted dying. I have no intent to interfere in the Guernsey debates. My intent is to add fact-based information about Oregon not laced with innuendo. Baroness Finlay’s patients may be more comfortable bringing the topic up because debates about assisted dying in the UK and Guernsey provoke conversations. Each conversation, regardless of who brings it up, is an opportunity for Baroness Finlay to inform another of her patients about how she may meet their needs legally. Few people are aware that palliative sedation, for instance, can make them unaware of anticipated pain and suffering, which is more likely than actual pain to motivate a request for a prescription.
Palliative care is very, very good at managing pain and physical symptoms. Palliative care is not so good at meeting other needs, such as needs related to autonomy and control.
Ninety per cent of those who use the ODDA die in hospice care at home. A wish to die at home is another significant reason for a request of a prescription. Research shows that 80% of Americans want to die at home; however, 60% die in hospitals. In Oregon, fewer than 30% die in a hospital. More than 50% of Oregonians die at home, wherever they live, in the care of Oregon’s hospices.
However, Baroness Finlay appears to dismiss hospice in the United States because it is ‘home-based’ care and not in a hospice.
Bringing hospice care to the patient across all settings – at home, in an inpatient hospice, and in the hospital – is more compassionate, more comprehensive and more cost-effective. Palliative care in the UK has been a model for Oregon. We look up to you.
The Oregon Hospice Association – and Oregon’s first hospices – were established by nurses in the mid 1970s. They were among the first in the US. Oregon Health and Sciences University began palliative care programmes to both nurses and physicians in the early 1990s. Hospice rotations were offered to first year medical students in the 1990s. Specialities in palliative care were adopted for physicians and nurses in the late 1990s. Certified palliative care nurses and board-certified palliative care physicians practice throughout Oregon.
Baroness Finlay dismisses the Medicare/Medicaid Hospice Benefits, ironically, the only health care plans offered as entitlements in the United States. We fully admit that our health care system has much to learn from the UK.
Hospice is the gold standard and a subset of palliative care. It is a well-defined health plan under Medicare and Medicaid – and unlimited in length. Yes, some patients live longer than 180 days. Would it be reasonable to punish them for living too long? In fact, too many patients are admitted so late as to not benefit from the full array of hospice services.
People are eligible for the Medicare/Medicaid and many private hospice benefits when they have an estimated life expectancy of six months or less and are no longer seeking curative treatment – or choose to forgo treatment. Oregonians, and citizens of the US, have the right to refuse treatment. They may, at any time, leave the hospice benefit and return to their standard health plan for a new course of treatment. Should they change their mind again, or if their condition deteriorates, they may be readmitted to hospice, immediately, for as long as they meet eligibility requirements.
It is important to recognise that it is the patient’s prognosis of six months or less, as a disease follows its normal course, that is a critical determination as to whether a patient is eligible for a prescription under the ODDA.
The select committee was misinformed if they were told the benefit was a one-way ticket out.
Hospice is one of the ‘independent mechanisms’ that complement ‘rigorous monitoring’ of the ODDA. Others include the justice and criminal systems. Hospice workers frequently visit the homes of people who consider assisted dying, so are in the unique position of witnessing family dynamics and identifying potential or actual coercion or abuse. Hospice workers have contributed to research, helping to close the data void that existed before Oregon became the first jurisdiction in the world to offer assisted dying in a legal environment. Hospice workers are in the unique position of being able to compare people who use the ODDA with those who do not. Their experience is significant. A request for information or a prescription is a sure way for a timely referral to hospice care.
The hospice social worker assesses every patient on admission to hospice for psychosocial issues, including depression, and develops interventions for symptom relief. The hospice interdisciplinary team, with the social worker’s input, develops a care plan. The care plan is evaluated and updated regularly.
The patient’s ability to make and communicate health care decisions determines a ‘sound mind’. If the prescribing and consulting physicians have reason to believe that a mental condition may be compromising that ability, the law requires a consultation with a psychiatrist or psychologist. Being depressed is not a reason to deny a request. The bar is high enough that people who are clinically depressed are not able to complete the safeguards.
Baroness Finlay laments ‘doctor shopping’. I congratulate those physicians who are filling the void. Some physicians are not able to accept a request because of their own personal or religious beliefs. Some cannot because they are practising in hospitals where the Catholic Church or another entity determines the kind of care offered in a community. Baroness Finlay is a specialist in palliative medicine. I foresee the possibility of a sub-specialty in palliative care or other specialities in medical aid-in-dying. I personally know physicians who have bravely stepped up to the plate. I would trust my death with them.
Again, I appreciate the opportunity to clarify what really happens in Oregon. I remain convinced that physician-assisted dying can be, and is, practised responsibly in Oregon.
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