None of us knows when or how we will die and most take it for granted that we have no say in the matter. But some of us who may suffer a long illness can control how long we will live and under what conditions.
Cancer, heart disease, Alzheimer’s, AIDS, diabetes — eventually they may be the enemy. Regardless of our age and present health condition, it is important to let your partner, close friends, family, health-care provider and lawyer know your wishes with regard to end-of-life matters and “dying with dignity.”
This conversation, as difficult and painful as it may be, must begin now. Forethought and planning may assure that you will be surrounded by loved ones, in your own bed, pain-free and comforted. Some may even be able to determine the time and manner of their passing.
When these decisions are made while you are still in good mental and physical health, steps must be taken to assure that those wishes and decisions are fulfilled. Legal documents, including a will, living will, health-care power of attorney, financial power of attorney and disposition of remains, must be completed.
So many in the LGBT community have been caregivers and have experienced these difficult situations. We have rushed to emergency rooms, sat at bedsides and said our goodbyes at a hospice. The number of these experiences will multiply as we, our friends and families of choice, age.
With age comes knowledge and experience, and sometimes the weight of that information bears heavily on us. We have seen loved ones pass away in different circumstances and from different causes. Some have passed with full knowledge and understanding of their situation, others with no time to think or plan.
Medical science has proven that it can keep us alive beyond expectations. One of the questions becomes, how long is long enough? When is it no longer worth the pain, the burden on loved ones, the money?
Who is allowed to choose your quality of life? According to medical ethicist and author Dr. Frank Barham, “patients’ wishes should trump everything, and they should be voiced and legally documented.”
There are no easy answers. So many unknowns, such difficult decisions. Have you ever hoped that someone would die more quickly so that their pain would end? Have you asked yourself, Is it worth a day or a month to simply lie unaware of your situation or surroundings, or in pain, bedridden and waiting for the end?
What is the threshold quality of life that would make you decide it is time? Barham recommends, “Ask the patient, or yourself, in advance about threshold circumstances. Ask hard questions and seek concrete answers.”
In some cases, terminally ill patients may be able to determine the time and manner of their passing. A conversation has restarted about the taboo topic that Dr. Jack Kevorkian brought to light decades ago: assisted suicide. Some European countries permit some form of assisted suicide, as do four states: Washington, Oregon, New Hampshire and Vermont. New Jersey is contemplating “Death with Dignity” legislation that would permit people to make their own choices, with many restrictions.
To help inform your conversations about end-of-life planning, visit Compassion & Choices at www.compassionandchoices.org or call 856-366-6385. Seek the support of a geriatrician, geriatric social worker, elder-law attorney or other professional with experience navigating end-of-life decision-making. Some additional resources are the Alzheimer’s Association at 800-272-3900, the SeniorLAW Center at 877-727-7529 and the AIDS Law Project of Pennsylvania at 215-587-9377.
Finally, if you are considering suicide because you are depressed or for a reason other than dealing with a fatal or painful and debilitating illness, please seek help from your health-care provider, faith representative or trusted friend. Some hotlines that you can access are: VET2VET, a veteran’s crisis hotline, at 877-838-2838; or www.suicidepreventionlifeline.org/ National Suicide Prevention Lifeline at 800-273-8255 or 800-784-2433. For Spanish language, call 888-628-9454.
Ed Bomba is communications chair of the LGBT Elder Initiative. The LGBTEI, headquartered in Philadelphia, fosters and advocates for services, resources and institutions that are competent, culturally sensitive, inclusive and responsive to the needs of LGBT elders in the Delaware Valley and beyond. To comment on this article, suggest topics for future articles or for more information, visit www.lgbtei.org or call the LGBTEI at 267-546-3448 and watch for “Gettin’ On” each month in PGN.