At some point, your life intersects with the medical community. Sooner or later, you hit that crossroads, whether it is with regard to your own health or the health of someone you hold dear. Chances are, that moment may come at a time when you least expect it. It can hit at full speed, like a sudden hurricane or tornado. It will take your breath away. And, as you try to stand to face what you must, the relentless, crushing waves keep hitting you, and you keep trying to stand, again and again. You must live this tragic moment with whatever coping skills, tools, and resources you have obtained in life up until that very moment. There is no time, not even a second, to recuperate, educate, regroup, consider, before the next breaker hits. You must live the suffering until it is finished, and you have no control over when that happens. Then, when it is finished, you must face the devastated landscape of your life.
At least this is what happened to me when I learned that my father had cancer. He was in otherwise good health, facing a few health uncertainties, when suddenly his life and our lives changed with the violent and swift turn of cancer. Two weeks and three days later, he died. We had no idea tragedy was coming, yet we were forced to face the suffocating panic of it all.
The purpose of this article is to share some of the personal experiences my family had with the medical community. Some insight may prepare you to provide comfort and guidance to others. Whether or not the experience you face is as sudden or as fast-paced as my experience with my dad, I pray that you will both receive blessings and share blessings in some way as a result of this article.
When my father faced difficult medical issues, and then suddenly, cancer, both he and his wife were entirely consumed with tremendous emotion. My dad, of course, was at the very epicenter of the storm, and his sweet wife's unwavering attention remained fixed on my dad's needs. Their raw emotions and confused minds birthed an urgent need for a primary family support person and advocate in the midst of the medical crossroads. It was crucial for me to have complete access to his medical records and medical team without the futile and burdensome walls of privacy laws getting in the way (HIPAA privacy laws). HIPAA is the law and all healthcare providers must abide by it. However, consider signing privacy waivers in your medical files now, in advance of any crisis, to allow your loved ones access to your records and to allow them to talk openly with your doctors and nurses should an urgent need suddenly arise. Your family members will be on the front lines as your advocate, and they need to be armed with the ability to freely communicate with the health care providers.
Thankfully, my father had soberly thought about and decided upon his personal viewpoint regarding critical ethical issues well before facing the news of cancer. I cannot underscore enough how much assurance it gave me to know his specific decisions on such issues as artificial nutrition and hydration once he became mentally unreachable. I certainly did not want to make a “best guess” for him on those heartbreaking issues once I was in a position to support his wife as she made those decisions as his personal voice.
Be sure to complete a detailed durable power of health care well before you ever face a medical crossroads. Have a specific out loud conversation about these sobering issues with trusted members of your family who will be a direct part of navigating through the medical community. Repeat this specific out loud conversation from time to time in order for your loved ones to know with certainty that your decision remains the same. Give copies of the paperwork to several trusted family members. This type of clear communication may help diminish the family feuding that often arises among family members who disagree with these precarious end-of-life choices.
Note also that you should tell your family members where your original will is located. Also, consider drawing up a power of attorney to leave with your lawyer to put into effect for temporary illnesses. Tell your family members the name of your lawyer.
One last legal point, if you have lawyer-ish questions about wills/estates/guardianships, check to see if your state has a website for the state judicial branch—typically, many questions can be answered there.
It is impossible to predict whether your medical crossroads will be filled with physicians and nurses who are candid, forthright, and timely about giving you critical information regarding your medical diagnosis and prognosis. Unfortunately, my dad's experience was filled with inconsistent messages, unintended false hope, and foggy partial disclosure. Without the most complete information, my dad was left severely hindered in his ability to intelligently, calmly, and prayerfully consider his medical options in light of God's will. Remember, you have no control over when your last day of life will be, but timely and accurate information can help you best steward the quality of each day within the medical limits that you might face. Face the facts without fear and cast all your burdens on the Lord. Take courage. Insist that your medical providers give you full information with candor, even though your instinct may be to hide from the truth and their instinct may be to “sugar coat” it. Your family members who are supporting you should be assertive about having private conversations with medical personnel outside of your presence, given your emotional distress, so that they can be sure you are receiving the “straight up” facts regarding your medical status. Your family advocate should be prepared to ask the tough questions and to receive tough information in order to enable you to make the tough decisions by God's grace and through family guidance.
Hospitalists, primary care physicians, emergency department (ED) doctors, medical specialists—who has the authority; who is in charge of your care? Perhaps this legal construct does not exist everywhere, but this is what I have learned: 1) your primary care physician is in direct control of your care when you are outside of the hospital; 2) the “hospitalist” doctor (or licensed nurse practitioner) is in direct control of your care when you are admitted into the hospital (leaving your primary care physician out of the loop, but perhaps receiving information about you); 3) the ED doctor is in direct control while you are in the ED, but before you are admitted into the hospital (then, the "hospitalist" would have the control); 4) specialists are consulted for opinions, but do not normally have the ultimate control over your care (see options 1, 2, or 3). As one doctor recently admitted to me, the medical field now consists of an array of independent towers and stand-alone silos, and does not operate as an integrated and interdependent community. Why does this matter?
Only the doctor in control of your care has the authority to issue "standing orders" regarding medicine, tests, and other decisions about the care provided to you. On occasions specialists at the hospital will assume responsibility for the portion of care which focuses upon their specialty, e.g. the oncologist may take responsibility for the person's cancer treatment while the hospitalist continues to monitor any other issues for the patient. The oncologist would write the orders for chemotherapy. Either doctor might write the orders for nausea and pain management. Watch out for falling between the cracks. When you are in the hospital, you often must wait and wait for the hospitalist to make his rounds. When you are released from the hospital and are at home, the hospitalist is no longer in charge, and you must rely on your primary care physician.
This matters because, if your medical condition involves the real potential for suffering pain, what do you do if your physical symptoms suddenly change in the middle of the night? You need to know in advance who is in control of your care and what is the direct and immediate access point for necessary help. Ask for "just in case" instructions on who to contact and what additional pain medicine you can have on hand at home to take in the event that your pain unexpectedly changes. Get a clear picture from the doctor about the use of pain medicine under potentially changed conditions. The doctor may prescribe an amount based on your present pain experience; but if your regular dose isn't working, what next?
Note that home health or hospice "bridge" programs are available to provide regular at-home care for your loved one and teach you how to help in caring for them. To account for unexpected changes, "bridge" programs sometimes can provide you with pain medication or "comfort packs" (a collection of medications which are kept on hand in case symptoms change rapidly) and twenty-four hour phone hotlines for any-time-of-day-and-night questions. These "bridge" programs can provide real comfort in the home environment.
I found that the medical industry often needed strong reminders that human dignity prevails over medical convenience. When my father could walk, he should walk and not be whisked away in a wheel chair for their convenience. When my father could not walk, he should be accompanied in a wheel chair and not whisked away lying flat in a hospital bed on display throughout the hospital. After all, Dad was made in God's image and whatever measure of dignity can be preserved, should be. Be a bold advocate for your loved one's dignity.
Also, seize moments to read Scripture and pray, even when it means causing physicians or nurses to wait momentarily before hustling your loved one to the next test or procedure. Pray specifically for the physicians, nurses and other staff who work with your loved one; but also be respectful of the tight timetables associated with many of those tests and procedures, delay too long and your act of love for your family member can become a real liability for other patients and families in need of those limited resources.
Many hospitals now include a palliative care team which looks at comfort and quality of life issues for persons being treated in their facility, particularly those who are considered near the end of life. When your loved one is in the hospital, members of the team make rounds just like other doctors; they are not present with you all of the time. Family members and friends still serve as the best front-line for ensuring that human dignity is at the center of your loved one's care. Many hospitals also have "patient advocates" who will meet with you privately to assist you with any concerns that you may have about the care your loved one is receiving.
Doctors can be a whole lot more interested than you are in collecting as much information as possible about your physical status as possible. On the other hand, you may be a lot more interested in ignoring the painful truth about your physical status simply because you may believe deep down that ignorance is bliss. How the balance is struck between these two positions probably depends on who you are and what kinds of decisions you want to make. How do you decide whether the medical tests may be a waste of your time, or whether the tests may give you the information that you need to make sound decisions about the quality and dignity of your life?
Remember that diagnosis is necessary for prognosis. Diagnosis requires testing, and, prognosis leads to possible treatments. So, both diagnosis and prognosis involve much, much time at the doctor's office, at the hospital, at the pharmacy, and so on. The tests themselves can be lengthy, invasive, uncomfortable, painful, and even frightening. If you are not interested in the treatment that ultimately could be offered, then why go through the tests to begin with? Or, at what point have the tests generated enough information that is sufficient for you to make a relatively informed decision without exploring all tests recommended. Be bold in asking the purpose of the tests offered: what information will be gathered; how will the information prepare you for making decisions; when will you be told the results and by whom? Each test is a choice that you make about properly stewarding your time and the quality of your life. If you are not intentionally getting involved in the decision making, then you are leaving that decision for someone else to make.
Your normal life may already be full enough with appointments and routine commitments. Once your life becomes entangled with the medical field, keeping track of the onslaught of new information and managing new medications can become overwhelming very quickly. From one appointment to the next, you can soon lose track of changing physical symptoms or the important questions that have been floating around in your mind. As new medications are prescribed or continually changed, the fear of missteps increases. The constant changes and new information creates intense stress as you try to sort it out and manage your care or the care of your loved one.
Use a blank calendar to document appointments, tests, and any change in physical symptoms. For example, has the pain moved from the upper back to the lower back? Has the pain gone from a three to a six on the proverbial pain scale? Also, keep a chart with a daily time schedule to document regular medications and new medications. For example, some pills may be twice a day, others may be every four hours. List the different physicians/nurses and contact numbers, along with pivotal family/friend/church contacts. Keep a list of questions to ask for upcoming appointments or new information to tell the doctor. This organization provides comfort to the one who is sick and to his/her emotionally drained spouse. This organization also helps family members and friends who are taking shifts with care-taking to stay in the loop on necessary appointments and other information. Take the calendar and charts with you to every doctor appointment so that you can effectively and consistently communicate with doctors.
Health struggles and the end-of-life journey is a time filled with emotional, mental, and physical suffering, solitude, and loneliness. The crossroads at which my dad and family encountered the medical community was sudden and intense, like being hit by a freight train. Your experience may be more slow and steady. Nevertheless, your crossroads will be filled with difficult decisions. The experience can swell with suffocating intensity given the core differences each person brings to it: the loved one who is facing end-of-life decisions, your own reaction to that reality, the various family members who may want to be helpful, or those who constantly show a critical and contentious spirit.
In the midst of the tangle, the need for God's strong, tender arms can be beyond the person's ability to intellectually recognize and articulate. To serve and support someone who is traversing this road is a heavy, heavy load. It takes pure, unwavering, steadfast commitment. God provides his comfort, his strength, his light, and his prayers, in a significant way, through his people here on earth—pastors, elders, deacons, church family members.
While I journeyed the path of suffering, which I wanted to refuse to walk, but could not, it was pivotal to have people come alongside me and be present; people who were outside of the circle of chaos and had clearer minds and stronger hearts; people with the courage to face the intense emotions of grief, emptiness, solitude, and anger. There is no need to find the perfect wordsonly to be present, often times silently, sometimes suggesting practical wisdom for navigating a particular situation, and always offering prayer and Scripture. Share the well-worn Scripture verses in order to clear and comfort the person's mind and heart. Remind the person that our most merciful Father, the Living God, Abba, will provide protection and carry them through each minute, each hour, and each day to somewhere that God wants them to befor their good and for his glory.
"If the LORD had not been my help, my soul would soon have lived in the land of silence. When I thought, 'My foot slips,' your steadfast love, O LORD, held me up. When the cares of my heart are many, your consolations cheer my soul" (Ps. 94:17–19).
Jennifer Foley is a member of Amoskeag Presbyterian Church in Manchester, New Hampshire. Ordained Servant Online, June-July 2010.