Why is it more important than ever for the death positive movement to be political?
There has been growing concern over how the current change of administration in the US will affect the rights of immigrants, muslims, lgbtq people, dissidents and other minorities. Death is the great equalizer and dying well is a right that should be afforded to everyone whenever possible* regardless of sex, gender, creed, orientation, race, citizenship and religious beliefs. Having your loved ones at your bedside is a big part of dying well. An administration that doesn't recognize the rights of same-sex couple can hamper that, for example, and changes to health care could affect someone's ability to get proper hospice care.
Bearing in mind that this is only day 5 and things will change for better or for worse (I'm not terribly optimistic personally), I've assembled a few links that regard concerns and issues anyone affected by death (spoiler: that's everyone) should be aware and vigilant about. *It's obviously difficult to ensure a good death in times of war or natural disaster.
"More than 90 percent of hospice patients are Medicare beneficiaries using the Medicare hospice benefit, originally passed by Congress in 1982 and signed into law by President Ronald Reagan. Medicare is a separate entity from the ACA. Reform or repeal efforts to the ACA will not affect Medicare. It is unknown yet whether substantial changes to Medicare are being considered."
However, that is not the case for people who don't qualify for medicare and cannot afford insurance (and many fall into the bracket of population that cannot afford it even under ACA and don't qualify for any of the ACA benefits). Mark Betancourt writes for the nation that "at the end of their lives, many uninsured people, quite literally cannot afford to die with dignity. " While there are non-profit hospice centers and organizations that will not turn away patients based on their ability to pay, access to these non-profits depends on the patients' location. If you reside in an area that has no coverage from non-profit hospice organizations, fall into the ACA coverage gap and cannot afford your own insurance, dying well is not within easy reach.
Hospice services are also covered by Medicaid, including home care, inpatient respite care (IRC- in which the patient goes into a facility for up to 5 days to allow the caregivers a break), general inpatient care (GIC- for relief of acute symptoms and pain management) According to Medicaid.gov,
"Beginning March 23, 2010, with the enactment of the Affordable Care Act, Medicaid and CHIP-eligible individuals under age 21 who elect the hospice benefit no longer have to waive services for the cure or treatment of the terminal condition and can receive both curative care and hospice care for the terminal condition."
With the repeal of the ACA, this may be revoked and those under 21 will have to waive pursuing curative care in order to receive hospice. For example, a child that has terminal cancer will not be able to participate in any new drug trials for cancer remission (aka curative care) end receive hospice care at the same time.
It is still too early to predict how the new administration's health care directives and policies will shape up and how they will affect Americans' access to hospice care, but it is important to be aware of the ways end of life care could be affected. I will be updating this post with new developments as the changes in policies affecting end of life care crystallize. Please bear in mind that I'm not a legal expert, so I welcome any constructive feedback or suggestions at firstname.lastname@example.org.
If you are interested in more details on the possible logistical changes in hospice care policies, I would recommend this write up by LeadingAge.
The dance of death: Death entertains a crowd in front of a tavern by showing that a crown weighs as much or as little as a pipe. Woodcut by Schmidt after Alfred Rethel, 1848. Wellcome Library, London
How could access to a good death be hampered for lbgtq folk and families?
In the Time magazine article "Mike Pence’s Hateful Laws Almost Kept Me From My Dying Wife", Amy Sandler relates how she challenged Indiana's denial to extend marriage rights to same sex couples while her wife was dying of cancer and how Mike Pence, the current VP, roadblocked every step of the way. Sandler relates,
"In the last hours of her life, every second together counted. We didn’t have time to research whether or not the hospice company would respect our family. What if, in our most vulnerable time of need, hospice had been allowed—and protected, as Pence had wanted—to turn us away simply because we were a same-sex couple?"
It goes without saying that losing a loved one to cancer is a heartbreaking and painful time when any of hurdle or external worry gets amplified and becomes too hard to bear. This couple should never have had to worry about access to hospice or marriage rights at their most vulnerable time.
Alarmingly, the new secretary of Health and Human Services Tom Price has a longstanding record of promoting policies that undermine LGBTQ rights and access to services. He co-sponsored the First Amendment Defense Act, that will allow businesses, including healthcare providers, to turn away lbgtq folk on the basis of "firmly held religious belief". While being turned away from a bakery is something one can live with, being turned away from a hospice provider is another matter. It could severely impact access to a good death especially for people that live in rural areas and don't have a choice regarding which hospice provider to go to.
The dance of death: Death on horseback approaches the city. Woodcut after Alfred Rethel, 1848. Wellcome Library, London.
What about dying immigrants?
I recently had the honor of performing the role of the death doulafor a local loving couple, let's call them Anna and Vicky**. Anna and Vicky had been together for over 20 years when Anna fell gravely ill and was put in hospice care. The love and commitment between them was undeniable at first glance and even though they were not legally married, they were for all intents and purposes life partners till death. When I met them, we connected right away and I asked them if they wanted my assistance for comfort, company and respite. Vicky seemed grateful especially since there seemed to be no other person to help her care for Anna. I wondered why that was at the time and soon found out that Anna's relatives didn't approve of the relationship, as they were Christian Orthodox and conservative. You see, Anna was an immigrant from Slovenia. The couple feared more than anything that they would be prevented from being together at Anna's last days because they were not married. They feared entering hospice care and delayed it for that very reason, even though Anna's immigration status was legal. Despite their trepidation, they were able to have proper care and to be together till the very last moment. Anna died in Vicky's arms a few days after entering hospice.
Items (c) and (d) could apply to individuals seeking hospice care for themselves or undocumented members or their families. That effectively will mean that a dying 'out of status' or undocumented person will have to forego care that could provide support, not to mention invaluable pain medication or oxygen that would make the dying process more comfortable and humane. The 11 million undocumented immigrants in the Unites States already face many obstacles to getting good end of life care and by extension, a shot at a good death. As the authors of a cast study published in the Journal of Pain Management in the spring of 2016, entitled "End-of-Life Care for Undocumented Immigrants With Advanced Cancer: Documenting the Undocumented" report, patients with advanced terminal cancer face an array of challenges beyond the obvious like "delayed diagnosis, limited social support, financial issues, fear of deportation, and language and cultural barriers".
**Details of this story have been changed to protect the privacy of the people involved.
The dance of death: Death emerges from the ground and is greeted by a group of allegorical women, symbolising the vices. Woodcut after Alfred Rethel, 1848. Wellcome Library, London.
What about abortions and miscarriages?
There have been recent reports of women being forced to buy funeral services for their aborted or miscarried fetuses. While that's not accurate as this well-reserached post by The Order of the Good Death points out [NEW FETAL REGULATIONS IN TEXAS: THE GOOD (AND VERY BAD) NEWS] there has been an effort to create laws to promote and regulate ideas of personhood to aborted or miscarried fetal remains. Whether you stand on the pro-choice or pro-life side of the debate, consider that regulating the disposal of fetal remains as human remains in effect regulates grief, and that is a very troublesome direction. For the majority of women getting an abortion is a stressful and potentially emotionally charged event, even if the pregnancy is completely unwanted. Having to follow regulations as to how to dispose the remains of their fetus can shame and further upset women when they are most vulnerable. Part of the purpose of the death positive movement is to return the rites of mourning and burial back to the people and regulating that in any way goes against that very principle.
A few hours ago, the house voted to pass bill HR7 which seeks to make the Hyde Amendment permanent, cutting federal funding to abortion providers as well as federal and private insurance carriers that provide abortion coverage. Although HR does not regulate disposal of fetal remains in any way, it could indicate the intention of the cabinet to restrict access and legislate other aspects of abortion services. Thankfully, HR7 does not apply in cases of rape, incest or when the abortion is medically necessary to preserve the life of the mother.
Death as a friend. Wood-engraving by J. Jungtow after Alfred Rethel, 1851. Credit: Wellcome Images, London
Can we have Death with Dignity under this administration?
The Death with Dignity movement that supports the right for terminally ill patients to make their own end-of-life choices has made a number of advances recently. According to the Death with Dignity National Center, in 2015 half of the states in America had considered DwD legislature and in 2016, California became the fifth to make aid in dying legally accessible for the terminally ill.
However, the Roman Catholic Church is institutionally opposed to the idea of physician-assisted suicide and since the Trump administration seems poised to support Catholic concerns, it is possible that the administration could move to interfere with the advancement of the movement and the passing of state DwD laws. On January 12th, a group of congressmen introduced a resolution in opposition of the District of Columbia Death with Dignity act, even though the act has the support of DC residents and has been signed by the mayor. If the resolution, bill S.J. Res.4 , passes the house and senate by February 28th and is signed by the president, that signature would not only bar DC residents from accessing physician-assisted suicide legally and safely, but could also set the tone for the passing of Death with Dignity acts in other states.
In conclusion, the above are still developing issues to watch out for in the coming weeks. After all, it is always good to be proactive in all matters of life and death,