Trigger Warning: this article deals with sensitive end of life choices, like choosing to die rather than live, for the chronically ill
To live or die. Simple, right? The obvious answer should be to live. Well, for some people who struggle daily with chronic or terminal illnesses the choice is not so easy. Some are choosing to die.
For some extremely sick people, the effort to remain alive gets exhausting, expensive and frustrating. For these people and their loved ones, quality of life deteriorates.
I survive with help from several doctors and specialists. I have doctor’s appointments, daily home-health nurse visits, I use Durable Medical Equipment (DME), receive daily central-line care, total parenteral nutrition (TPN), feeding tubes, ostomy care, oxygen, catheters, tracheostomies, ventilators, transfusions and a cocktail of different medications. That doesn’t account for occasional hospitalizations, some of which last weeks. All in an attempt to maintain some version of a stable existence.
If all of that worked smoothly, perfectly, it would still be a burden. But of course, it doesn’t. We chronically ill fight for the care we need. It’s expensive and the red tape seems endless. Fight the pharmacist, the doctor, the insurer, the hospital administrator. We fight the haters, the disbelievers, the stigma, all while fighting off death.
It is exhausting.
If you live like this, you feel like a burden on others. My loving family continuously reminds me that it’s not a problem. What of those who don’t have such support? The struggle must seem hopeless. The endless struggle and frustration can take root, evolve and metastasize into depression and anxiety. When despair piles on top of everything else, it makes you just want to call it quits.
I have caught myself in that hole several times, thinking that staying alive shouldn’t be so hard, wondering, ‘is it all worth it?’
I have a degenerative disease. Mitochondrial disease has led to several secondary conditions. One of those is gastroparesis. My stomach and intestines do not process or absorb food or nutrients. That’s why I need parenteral nutrition. I receive my nutrition artificially. But over the years of having this disease I have lost more and more of my health. On Facebook, there are several groups to memorialize people who have died prematurely from gastroparesis. I worry I will be on one of those.
People need to know that when the quality of their life falls below a certain point, they have options. You are not an awful or selfish person for making choices about your own life. It’s your life and you are in control of it. Sometimes choosing to die is the only dignified choice.
The ethics of choosing to die are complex. It is something people feel very strongly about. This is a quote from The Hastings Center, a nonpartisan, nonprofit organization of research scholars who are at the forefront of bioethics, moral principles that guide medical and biological research.
LAST RESORT OPTIONS
State-of-the-art palliative care remains the standard of care for any end of life suffering, and last resort options should only be considered when such treatments are ineffective. Good palliative care services are not available in all locations; efforts to increase education and proliferation of these services are being made by medical and other professional groups, state initiatives, progressive health care systems, and patient advocates.
When considering cases of intractable suffering in the face of excellent palliative care, whether PAD (Physician Assisted Death) is legal or not, clinicians should be fully aware of alternative “last resort” options which may be preferable and about which there is greater moral consensus. Prescribing medication for aggressive management of pain and other symptoms, even in doses that might unintentionally hasten death, has wide ethical, legal, and professional acceptance. This practice can be justified on ethical grounds by the doctrine of double effect, which holds that even though it is wrong to take someone’s life intentionally, it can be permissible to risk foreseeably hastening someone’s death as long as the intention is to relieve suffering.
If all of this seems unthinkable, that is natural. Entering into this choice requires knowing one’s options and the consequences of your choice. I’d like to tell you about a friend who helped me appreciate the scope of this decision.
I had a friend who was in this position. What she went through opened my eyes as to how we, as patients, can advocate for ourselves, even when there seems to be no options left.
She had no place to go, she was exhausted from repeat and frequent hospital admissions and progression of her illness. Her mind, her body and her spirit were spent. She wanted to be comfortable and to not worry constantly about her health, various appointments, being a burden on others.
She bravely made the choice to stop her treatments and go on hospice care while in the hospital. The main focus there was pain control, which would allow her to enjoy what time she had left with her loved ones and a better quality of life.
There is a misconception that hospice is just watching as someone dies. Hospice offers medical care but “toward a different goal: maintaining or improving quality of life for someone whose illness, disease or condition is unlikely to be cured.” – HospiceFoundation.org
Some might wonder how quality of life can be improved in such a dismal state. Remove the pressure of appointments, transports, infections, procedures, depleting your money and false hopes and you suddenly find room to focus on being with loved ones. It also makes room to get proper pain management or palliative care.
The goal of palliative care is to help people with serious illnesses feel better. It prevents or treats symptoms and side effects of disease and treatment. Palliative care also treats emotional, social, practical, and spiritual problems that illnesses can bring up. When the person feels better in these areas, they have an improved quality of life.
Palliative care can be given at the same time as treatments meant to cure or treat the disease. Palliative care may be given when the illness is diagnosed, throughout treatment, during follow-up, and at the end of life.
My friend…her lines were pulled, her treatments tapered and eventually, stopped. The hospital focused on her comfort, providing palliative care. It took almost two months for her to make the transition to death.
Her bravery and strength throughout this time left me in awe and gave me such a deep respect for her and other patients in similar situations.
If and when a progressively ill person believes they are ready to consider stopping the fight to live and instead just live what life they have left, they should discuss the various options with their doctors and family. However, it is important to remember that the decision is ultimately their own.
I hope this brings you hope as you fight your battles. You know what your breaking point is and perhaps you will discuss palliative or hospice with your family and your doctor and take control of choosing to die, with dignity. I have.
August is Gastroparesis Awareness Month (also called Digestive Tract Paralysis Awareness Month). Please share this article with others who you think might benefit from this information.
You may also find the following articles interesting:
“Rare Disease Patients, You Must Make Yourselves Heard” – by Samantha H Smith
“What is a Spoonie?” – an anthology article
Jennifer Lucio is a mom and wife from Texas, who has been struggling most of her life with mitochondrial disease. That rare disease triggered several other medical conditions including gastroparesis, chronic intestinal pseudo obstruction, Ehlers Danlos Syndrome, psoriatic arthritis and more. She no longer works, but when she did, she was a Registered Nurse. Jennifer has gifted her words to our readers hoping to do as much good as possible.