Dying is just that, an art! According to leading experts in the newly formed medical specialty of palliative care, there is definitely an art to dying, a way to die well. This art, when practiced while alive and well, enables a patient to seamlessly, effortlessly, and spiritually make the transition to the next part of his or her journey.
It is more than possible to feel a sense of well-being and comfort during the end of life journey. Some patients, while making the transition have described it as a sense when you feel “all is right with the world and with the people you love the most.”
Dr. Ira Byock, a leading expert in the field of palliative care and author of the book “The Best Care Possible,” encourages patients to ask some basic questions: Are my relationships complete? Is there anything critical left that has been unsaid that I need to say to my loved ones?
In most relationships, Dr. Byock describes the value in stating four very basic things to loved ones: Please forgive me. I forgive you. Thank you. And last, but most important: I love you.
No relationship is perfect, whether it is between parent-child, husband-wife, friend and friend. When relationships are complete, a “full sense of celebration creeps in with the time we spend with one another.”
It is these relationships and their human imperfections where we find beauty and solace at the end. Sentiments and empathy for these thoughts are important but nothing is more important than saying these four things out loud. And, as Dr. Byock emphatically states, “do it now!” Walking the journey more intentionally and thoroughly will enable an individual to capture that “good death” when the time comes.
When should I start making these preparations?
Today! The biggest statement of disappointment articulated by patients and their families is that they wish they had more time to prepare. People often do not talk about dying until there is a crisis.
Many new initiatives are offering innovative and creative ways to talk about a very tough subject. The Conversation Project and “Death Over Dinner” are working to take the fear out of these discussions, encouraging families to cultivate an ongoing dialogue long before it is needed. There will never be a one-size-fits-all but families and loved ones can always know what their loved ones want. The sooner the conversation starts, the more time everyone has to think and reflect.
What other kinds of dialogues and conversations should individuals have in order to best prepare for end of life transitions?
Practical matter such as type of care, length of care, wishes of the patient – all of these should be expressed sooner rather than later and with care and precision. When the end of life has emerged, it will be up to the patient to evaluate the medical care he/she is receiving and determine whether or not it is working, communicating that to healthcare professionals directly and in conjunction with family members.
It is also urgent, Dr. Byock stresses, to “incorporate mortality into concepts of full and healthy living.” At this point in history, he describes, we do not have a healthcare system: we have a “disease treatment system.” The medical system as a whole is today not fully prepared to treat the whole person. It is up to individuals to proactively manage their end of life needs and concerns and to start the dialogue early, not at the end. When individuals and patients are relatively comfortable, have received good palliative care and said the things that need to be said to each other, a sense of well-being and peace emerges.
Are there specific case studies of patients who have an “easier” time during the end-of-life process?
No one would ever describe end-of-life matters as “easy.” Yet, many healthcare professionals describe common trends among those patients who appear to be more prepared beyond the basics described above. People who have a sense of connection larger than themselves, either through their families, a relationship with God and a spiritual base of their life seem to be more prepared for death. Veterans and others who have a connection to something greater also fall in this category.
“When we become fully engaged with life, and live every day as it is our very last, we live more fully, richer,” describes Dr. Byock. “All we have to do is be part of human life. We do not have to be dying; we just have to be mortal.”
Beyond these meaningful dialogues with family and loved ones, what else needs to take place in order to be well prepared?
“The completion of responsibilities is another vital first step,” states Dr. Byock. These consist of the simple, basic things such as managing and tying up fiscal and legal matters which have a tendency to drag people down. Bank account information, passwords --the basics matter a lot.
What does good palliative care look like?
Palliative care treats the whole person – mentally, physically, emotionally and spiritually. Providers ask questions: what are the patient’s wishes? What did his/her life look like? What would be normal reactions to everyday life issues? The answers to these questions provide clues that help the healthcare provider understand the whole person and not just an illness. Third and fourth opinions on treatment options should include conversations with palliative care specialists.
According to Dr. Glen Komatsu, a leading palliative care specialist at Providence Healthcare, palliative care also deals with “total pain” which is often the most ignored: the psychological and spiritual. Even with the best of medical treatment, a patient will often feel hopeless, helpless and in many cases, completely depressed. He or she cannot articulate deep seated despair. In many of these cases, a patient will contemplate prematurely taking his or her life.
What are some of the policies of the medical community when it comes to end-of-life issues?
It is generally agreed among the healthcare professional community that they system is falling short. More work needs to be done in the area of palliative care and enabling a patient to achieve a quality of life. Families are in the best position to truly understand what pain looks like for the patient and to engage in proactive advocacy for their family member. They will need to push the healthcare practitioner to see the total picture and recommend the best care options according to what the patient wants.
It is the desire on the part of many who work in the area of palliative care that the specialty becomes more integrated with end of life care and the quality associated with the specialty becomes higher and more equal throughout healthcare facilities nationwide.
What are some of the problems patients encounter at the end of life?
The largest problems arise around communication issues: did the patient give family and healthcare providers instructions or a medical directive? If no such instructions exist, what are the wishes of the patient? Does the family have a sense what the patient desires as this point in his/her medical care?
Understanding care options is another challenge: many patients do not fully understand available options or care options that are currently available. Understanding their right to palliative care is critical. The practice of palliative care is relatively new (institutionally recognized in 2006) quality between institutions and practitioners will vary given the professionals training and experience in the field. Understanding options enables patients to more fully and thoroughly advocate for themselves.
How do I know if I am on the right track?
Fully understanding that life is a precious gift is the first step in moving in the right direction. Living as fully as possible, in the most respectful way prepares us for the end of life.
“Every person has the capacity to be healed, even if he or she is dying, reminds Dr. Komatsu.