By Karen Morin Green, RN
Now more than ever, these discussions cannot wait. I encourage everyone to have an end of life conversation with spouses, partners, loved ones, parents, siblings, mature children, and your doctor.
– But I’m fighting cancer, focusing on treatment! Why talk about death now, when I feel good, and it’s going so well?
As a long time oncology nurse and support group facilitator for those with metastatic disease, I understand you, your family, and your medical providers are all laser focused on treatments and living. I often had patients that complained they actually wanted to talk about death and dying, and discuss and what quality of life means to them, but not only did their families divert or defer these discussion about end of life but their doctors often also avoided the discussion.
Today, I write to urge you, even plead with you to HAVE THE TALK!
COVID-19, has had unprecedented impact. Now is an excellent time to discuss and plan what would happen if you got this infection. We know that those with heart disease, diabetes or COPD; suppressed immune systems from illness or cancer treatment, and any underlying significant conditions and their family members are at risk. COVID-19 is also attacking young, healthy people. It is in everyone’s best interest to have the best plan you can for all members of the family. None of us know when our time will come and the best time to make plans is when we are healthy and sound mind. We have all looked the other way but the images on television and news stories have sent many to want to reach out take control and make plans.
· Do not wait for your doctor to ask or bring up end of life issues.
· Be your own advocate! Let your doctor know you want them to be open and honest with you about your illness and prognosis.
· Identify your health care proxy and Advanced Health Care Directive by choosing the person you trust to advocate for you. You may not get a warning before you can’t speak for yourself.
· Remember, Medicare pays for an end of life discussion; even via “tele-med” calls.
· Make sure that your doctors, family, and your advocate know your wishes about all interventions at End of Life. Research has shown that up to three-quarters of treating physicians didn’t know their patients had an Advance Health Care Directive.
· If you are elderly or have underlying disease at an advanced stage consider a new tool The National Hospice and Palliative Care Organization has published a new tool it assists with making decisions should you are a family be faced with COVID-19. It factors in age, current symptoms, other diseases and helps determine your likelihood of survival should you contract the virus. It may also get you thinking about your preferences even if you aren’t infected with the coronavirus.
Be mindful of COVID-19 specific issues:
· Decide whether you want to go to the hospital (with all of the potentially life saving measures) if the COVID-19 disease progresses, potentially isolated from your family; or would you rather remain at home with comfort measures and care.
· Understand what it means to go on a ventilator and the potential difficulties of coming off a ventilator.
· Discuss with your proxy your wishes about CPR
· Check out Prepare for Your Care (https://prepareforyourcare.org/welcome) and it’s new COVID-19 update with downloadable forms and checklists as does CompassionandChoices.org, which also provides free care fact sheets and planning tools and a special COVID-19 add-on sheet (https://compassionandchoices.org/wp-content/uploads/COVID-19-Addendum.pdf).
Those who have conversations with their doctors about advanced care planning enjoy increased satisfaction, confidence, control, and influence regarding their care. Patients who talked with families about specific preferences in their end of life care felt less anxiety and fear. These discussions create and sustain trust and comfort. Family members are then able to make difficult decisions with confidence and clarity knowing they have followed your wishes and are grateful and comforted. Every situation is different; make sure you have made lists of passwords and important papers.
COVID-19 moves quickly. Not doing anything, not discussing these issues can instantly become an uncorrectable mistake. Don’t wait! Become your own advocate by beginning these conversations now. Frankly discuss your wishes, learn other family members’ wishes, and make sure proxies are identified. Give your doctor a copy of your completed Advance Health Directive. Make sure your doctor has the contact information for your appointed health care agent. All of us want to die peacefully, but we cannot do it alone. If you want some control during these uncertain times it’s UP TO YOU!