I struggled more than usual with this particular case because in my eyes the decision to let this woman pass away peacefully and pain free seemed so obvious; I feel like a head bleed at the age of 90 and your heart stopping is a significant sign that death is your fate at this moment; why would her husband allow us to do these things to her? If he was truly a religious man then why would he not let her meet her full union with God? To me there is an obvious disconnect between the healthcare world and the spiritual world and I needed clarification.
Because I consider myself more of a spiritual person than a religious person, I enlisted the help of my friend and hospital chaplain Stephanie Wright. Stephanie's job is to help patient's and their families who are struggling with spiritual and end of life issues (she is also a pseudo-therapist for nurses too). After talking with Stephanie and doing a little research myself, I have determined that people and their religious communities have not caught up with constantly changing medical technologies. The general population does not understand what it means to be intubated (be on a breathing machine), what artificial nutrition entails, what happens when you have a stroke or heart attack. Most people don't even know what a heart attack or stroke is. How can we entrust them to make good educated decisions about themselves and the future of their family members if they don't fully understand what's going on? Many people turn to their faith to guide them when they don't know what to do but nowadays most religious communities don't even know what to do. It's like the blind leading the blind.
Not too long ago death was something that was experienced in the home. People would gather around the dying individual praying, singing, performing sacraments and rituals, welcoming death as this person's full union with God. Death was not foreign and was considered just a part of life. Nowadays, people spend their last days in the hospital laying in an insanely uncomfortable bed, being poked multiple times a day for lab draws and IV's, attached to monitors, eating really unhealthy hospital food, probably on some form of life support, and surrounded by doctors and nurses who I guarantee are not singing or praying. What I find more interesting is that studies show 7/10 Americans say they would prefer to die at home but only 25% of people actually do; 70% of people die in the hospital and the remaining 5% , I guess, die outside. Here is the website with the facts and figures http://www.pbs.org/wgbh/pages/frontline/facing-death/facts-and-figures/.
There is a huge disconnect between what patients say they want for themselves at the end of their life and what actually happens to them when they get there. I think there are various reasons for this mass confusion in the decision making process (later blog topics) but today I am only going to focus on spirituality. How do we help people and religious communities clarify and start addressing end of life decisions?
- If you are a religious individual I think it is especially important to understand how your particular denomination addresses end of life issues. Stephanie has informed me that in her practice as a chaplain she has noticed that many religious leaders and pastors are not comfortable talking about death and dying with their patrons. If this is the case in your spiritual community maybe it would be a good time to bring up the topic and start the conversation. Stephanie has begun end of life discussions in many of her local churches and finds that there is a great need for education.
- Educate yourself and ask questions. What does it mean to be on life support? What is artificial nutrition? Do I want CPR and a breathing tube if my heart stops? What are the risks of certain procedures and are the risks worth it? What are my options? Ask your religious leaders how they feel about life support and death and dying. If you are uncomfortable with their answer then seek out other spiritual practices that might have a more definitive answer that suits you. The link mentioned above is a great source of information in the area of end of life.
- If you are in the hospital, ask the nurse to speak with the hospital chaplain. Hospital chaplains are trained specifically for patients struggling with spiritual and end of life concerns. They are excellent listeners and play a significant role in the holistic approach to patient care.
- Nurses, fill in the religion box in the admission history and ask the patients if they want a hospital chaplain to visit them. Recognize when your patients or families are struggling with end of life issues. Are they worried about dying? Have they been diagnosed with a terminal illness? Are they not getting better? If you have a palliative care team in your facility utilize them.
- The most important step of all is to determine what "quality of life" means to you. How do you want to spend your last days? This is especially important for people who don't follow some form of organized religion or spiritual practice. When you feel like you know what you want, write it down in the form of a living will.
Pope Paul VI said "science without conscience can only lead to man's ruin. Our era needs such wisdom more than bygone ages if the discoveries made by man are to be further humanized. For the future of the world stands in peril unless wiser people are forthcoming." It is time for us to be the wiser people and educate ourselves and our communities in the area of medical technology and end of life. We must use our hearts, minds and moral principles when making such decisions in order to prevent technology and not spirituality from determining our fate.
