When I was initially diagnosed with cancer, we did not have any direction from our Doctors or the hospitals I was treated at. Without having any guidance on what the next stages were and where we were supposed to go from there, we often felt that we were out there on a lonely island, constantly wondering what was next or if we were taking the right steps and moving in the right direction. We of course had never been through anything of the sort. As my journey continues, my passion is to spread awareness and if this post reaches even one person and helps them, then that will be a blessing.
Dr. Haselhorst’s passion is preparing and making us aware of the questions we should be seeking, if we or anyone we care about are put in an unfortunate situatuon. Please read Dr Hasthorst’s feature below:
Patients often find it difficult to talk to physicians when they don’t particularly feel well. They tend to lack self-respect in these situations, failing to speak up for themselves. Naturally, this sentiment reflects upon physicians who are seen as not treating patients with dignity. Dignity implies self-confidence and certainty, rarely afforded to patients. Patients are mostly discounted in the decision-making process because they are not asking the right questions at the right time.
Emergency Medicine physician, Kevin Haselhorst, author of the book Wishes To Die For, firmly believes that patients have to be more proactive in their life-and-death decisions by asking pertinent questions and becoming informed. He encourages people to complete advance care directives to alleviate undue suffering at the end of life. But most patients don’t know what to wish for when life takes a turn for the worse since they rarely know what is being asked of them.
“The ultimate choice to live or die is not really just a medical decision,” he says, “… it’s a spiritual calling and one’s healthcare directives need to become one’s spiritual guidance documents to the living.”
Dr. Haselhorst identifies ten important questions he recommends people carry with them when they go to the hospital or when they see their physicians. They are designed to help them ask the right questions, make the right decisions, and achieve the best outcomes. Here they are:
Is this medical test really necessary?
Most of the testing performed in the emergency department are normal. This might have been reassuring to the patient, but often unsatisfying overall. Is the patient’s time and financial resources being respected or wasted? If the physician was almost certain that the tests would be normal or that they would not change the treatment plan, then why is the test required? Asking the doctor this question increases the chances you will receive adequate information. If given the option, patients might wish to have doctors fine-tune their evaluations rather than shot-gun them. It can save pain in the emergency room and then later at home when the bill arrives.
Can you feel and understand my pain?
The doctor needs to know how bad is your pain, on a scale from 1-10, and where the pain is coming from. Patients are asked this question routinely, but the number is not as useful and important as the actions and expressions you share. What you feel and what physicians perceive has to be communicated carefully since it is critical information that often determines what the doctor does next. Without adequate discussion, you may end up being prescribed pain medication rather than a being offered alternatives to the real source or cause of the problem.
How am I supposed to cope with the stress?
Patients and physicians rarely consider tension to be the primary cause of headaches, difficulty breathing, chest pressure or abdominal pain. Many ER physicians are reluctant to enter into discussions with anxiety-laden patients and may unconsciously suggesting that these symptoms are all in the head. Asking the doctor this question reduces the risk of these symptoms being ignored and increases the likelihood of you getting help that goes well beyond merely coping with anxiety. While it is true that the end of suffering is ultimately gained through the practice of acceptance – going with the flow of acknowledging and letting go, you should not be required to suffering unnecessary stress.
How can I be sure you are taking me seriously?
Did the physician take the time to ask you a lot of questions? Did you know the answers and give the doctor detailed information? Surprisingly, it is difficult to describe how they feel or remember when your symptoms started. So write down the details you want to talk about with the doctor before you leave home. Tell the doctor what is going on, where and when it started. Tell the doctor what happened and what you’ve done or taken. The more you reduce the uncertainty that exists the better able the doctor will be to listen to your situation. Go prepared.
What am I to do next? What is the plan of action?
Ask the doctor to go over what you need to know once, twice, even three times. Till you get what you need to know. Don’t be the patients who claims, “The doctor never told me anything”. As well as you can, ask the doctor for information about what you should do and what you should know. Write it down. Seek first to understand, and then repeat what you need to do out loud to the doctor to make sure you understood. Ask for a verification of the plan of action and steps to be taken.
How old do you think I am? How old am I acting physically/mentally?
Very few people wish to look or act their age, but when you get to the ER, it’s time to fess up. Don’t try to act like someone younger or healthier that you really are or feel. Act yourself and be real with the doctor. Adopt an attitude of honesty, sincerity and reason. Be in charge of your health. Pay attention to the health issues you can change from the ones you cannot. Confront the reality of the decisions you have to make. Exercise the best judgement and wisdom you are capable of.
Do you want to see me again? When should I come back?
Make sure you get clear orders and that the reason to come back is necessary and appropriate. Not needing to come back to the ER is not a comment on your popularity. But coming back to make sure you don’t need cardiac-bypass surgery is necessary and appropriate. If you’ve been in treatment for a while, cutting ties with primary care physicians or signing out from the emergency department is usually scary. Ask the doctors to tell you when you should contact them and under what circumstances you should call for a return visit.
Am I dying? How long do I have to live?
These are two tough questions. You may think that you won’t be dying anytime soon, even if you are in treatment with a terminal illness. Healthcare professionals usually shield or discourage patients from thoughts of dying. Yet sometimes, these are the questions that need to be asked and confronted directly. Don’t believe your physician has a psychic ability to answer these questions. Be prepared and listen carefully to his or her best medical opinions and judgements.
What is the endpoint to my disease or illness? What is the final outcome of this process or treatment?
Ask the doctor if the condition is transient, temporary or permanent. Ask how long it will take to recover. Be real and be prepared. The actual medical condition may catch you off guard. You may have to deal with a lengthy recovery. The chances of survival may not be that promising. The outcome you hope for may not be possible and eternal life is not an option. Some time, the endpoint begins when you surrender – accept and understand – the medical conditions you face. It is only then that you can maximize the potential to both live the rest of your life happily and die with dignity and at peace.
Can you offer me spiritual guidance please? Can you respect my wishes to die with dignity in my own way?
Physicians connect with patients on many personal levels, but rarely through in a way that address one’s personal and spiritual needs. As the end of life draws near, you may have needs that the doctor cannot provide or address. While your doctor may appreciate the struggles of you face empathetically, you need to ask the doctor to stop intervening on your behalf and allow nature to take its course. Your dignity can be recognized if you tell the people around you to appreciate who you are spiritually, first and foremost. It is your right.
At times I feel I have such a casual approach to cancer and other times I’m in complete hysteria, where it plagues my every thought. Tonight is one of those nights.
Not too long ago I had the opportunity to score a feature story with 
Be Still My Heart Blog 