Wishes For The End

     The only thing that is certain in this life is that we must die. Sounds awful and morbid. But what’s worse is the reality. Too many people die in a way that they would never choose. Too many people die in the hospital or in a medical facility, surrounded by machines, tubes, over-treated, over-medicated, and subjected to endless procedures until their last breath. While an unexpected sudden death obviously cannot be planned for, discussing your wishes, values, and end-of-life care choices is extremely important. The best time to have the conversation with loved ones is when you aren’t in the middle of the throes of a medical emergency. I’ve witnessed it too many times before. Someone is in the hospital, unresponsive or in critical condition. Family members have moments to make decisions that will significantly impact the life of their loved one. Disagreements and conflicts arise amongst family members in an already high stress situation. Emotions run high. How can anyone think clearly and make informed choices at such a difficult time? If your spouse, parent, sibling, or other close family member was hospitalized and you had to make decisions on their behalf regarding their care, would you be able to?  If you and your loved ones do not have an advanced directive, it’s time to start working on one now. You never know when a medical emergency or accident may happen.  The time may come in your 20’s or in your 80’s. Having an advanced directive in place gives you and your loved one peace of mind that all options have been openly discussed. Unfortunately, many people aren’t aware of advanced directives and the importance surrounding them. In 2014, a study in the American Journal of Preventive Medicine estimated that only about a quarter of Americans had completed an advance directive.

     So what exactly is an advanced directive? An advanced directive is not just about “pulling the plug”. An advanced directive is typically comprised of two legal documents. A medical power of attorney names a healthcare representative or healthcare proxy to make decisions about your care in the event that you are unable to speak for yourself, for example in the event of a coma.  The other document, a living will, defines your wishes with respect to the level of care you would want in the event of medical emergency. For example, in the event of a coma, would you want a feeding tube or to be placed on a ventilator?

     My 4-year-old son often takes me on a date to the local diner on Wednesdays. Every time we are there, there’s a group of 4 ladies lunching at the same table in the back right corner. My guess is that they are in their late 80’s. They look fabulous and laugh a lot. We are often seated next to them. I must admit, the candidness of their conversations is both refreshing and shocking. This particular Wednesday, they talked about their deaths and end-of-life care openly and quite casually over their soup and half sandwich specials. I came to learn that they all had advanced directives. They were in agreement that there would be no resuscitations, that quality of life was more important than continuing treatments that had terrible side effects, and that if it was possible, all wanted to spend their last days at home. One woman stated she had finally figured out where to spread her ashes: she’d have a helicopter fly over Neiman Marcus and sprinkle her over the shoe department! Though I almost choked on my pancakes, I was impressed and made a mental note of that one.

     We can’t plan everything. We can’t plan our death. But we can have a conversation.  A conversation about what’s important to us at the end of life. If not at the diner, then at home over lunch or a cup of tea. CaringInfo.org is an excellent resource and great place to start.  The site provides free advanced directives and instructions on a state-by-state basis.  So, do you have an advanced directive yet?

Dear Cancer Patient: Don’t Get Lost! (Part 2)

     Last week, I paralleled the experience of a cancer patient navigating the healthcare system with that of the many passageways and blind alleys of a labyrinth. This week I’ll continue the discussion with the next 5 points in the journey where cancer patients get lost.

6.     Procedures: The doctor orders a diagnostic test or procedure such as a biopsy. Many cancer patients are confused and don’t understand why they need to get the test and never follow through. Some patients go for the test but never follow-up on the results with their doctor, assuming that the doctor will track them down. Many patients are confused about how to prepare for particular tests. Do they need to fast? Can they take their prescription medications? Do they need anesthesia? Do they need to go to the doctor’s office, the hospital, or some special facility for the test? Clearly more can be done to make this a simpler process. Providing patients with written instructions that are enhanced with illustrations or rationally designed pictographs may improve patient comprehension and compliance.

7.     Hospital: The average cancer patient may see dozens of doctors, residents, nurses, technicians, fellows, and staff (such as social workers and discharge planners) during a hospital stay for a surgical procedure. Each professional is a source of care and/or information. Sometimes patients may get conflicting information about their prognosis and next steps from different providers and people. Things get even more confusing upon discharge. Most cancer patients do not understand what their next steps are upon leaving the hospital. Who are they supposed to make a follow up appointment with and for what? When does that need to be scheduled? Who do they call with questions? What happens if they are in pain or experiencing complications? What prescriptions do I need to take? Who prescribed them and for what? Having clear discharge instructions is of essence for cancer patients leaving the hospital to ensure patient compliance as well as to improve overall patient satisfaction. Patients, do NOT leave the hospital until you are crystal clear about your next steps.

8.     Insurance companies:  In general, very few people understand the fundamentals of their insurance plan. Yet, people are shelling out thousands of dollars annually for a plan they know little to nothing about. Patients don’t understand what their plan does and does NOT cover.  When faced with a cancer diagnosis, many patients are shocked when the harsh reality sets in that having coverage does not guarantee being full covered. Dealing with insurance companies is not for the easily deterred. Insurance companies are well known for repeatedly denying claims, delaying decisions, processing errors, non-transparency, and confusing their policyholders with insurance-speak. Have a question? Great. Just call the member services number on the back of your insurance card, muddle through the automated menu, pray you’ve selected the right menu option, stay on hold for what seems to be a small eternity to speak to the next available representative, then brace yourself to be endlessly transferred, placed on hold, and eventually either disconnected or told to call your providers billing office. Back to square 1, only more confused and frustrated.

9.     Bills:  Cancer patients struggle with massive medical expenses and bills. Having health insurance doesn’t necessarily guarantee full coverage and eventually balances owed start piling up. While treatments and medical care are expensive, patients need to scrutinize each and every bill that they receive as medical billing errors run rampant in the industry. It has been reported that as high as 80% of all medical billing is incorrectly processed and contains some type of billing error. Patients, request itemized bills from your doctors and hospitals and get out your magnifying glass. Double check any questionable charges with billing departments prior to paying any balances.

10. Automated phone systems: Automated phone systems reduce the likeliness of callers getting a busy signal or being put on hold for extended periods of time due to the routing of other calls. With private practices and hospitals merging into larger facilities, menus of their respective automated phone systems are becoming longer with more and more options to select from. The number of prompts it takes to leave a message for their oncologist may overwhelm patients calling their cancer center. Some patients simply get confused and select the wrong menu option. I’ve been there. You have my sympathy because now you need to hang up and start all over. Even in cases when patients follow the prompts correctly, they may be connected to a voicemail instead of an actual person. Physicians, have you tried calling your own office and navigating your automated phone system? If you haven’t done so already, make sure you make it a priority.

          Navigating the healthcare system and its many uncertain passageways and blind alleys during a cancer diagnosis may become easily overwhelming and difficult. Hiring a private cancer patient advocate will arm you with the expertise and support you need to circumvent the unknown in your journey. You will be relieved of tedious and frustrating tasks so you may focus on what matters most: your peace of mind, recovery, and overall well-being.

Dear Cancer Patient: Don't Get Lost!

          Merriam-Webster defines a labyrinth as a place constructed of or full of intricate passageways and blind alleys.  The image offers an excellent representation of a cancer patient’s journey through the healthcare system. Our healthcare system is complex, fragmented, and filled with intricate passageways and blind alleys. Cancer patients trek through the labyrinth while fighting their disease.  In this first post of a 2 part series, here are 5 of the top 10 intricate passageways and blind alleys where cancer patients get lost in the healthcare labyrinth.

1.     Diagnosis: The majority of cancer patients get lost right after their diagnosis is delivered. Honestly, who wrote the terminology for diagnosing cancer?! The doctor may say, “Your biopsy results were positive.” and the patient sighs with relief, “That’s great news doc! I’ve been hoping for positive results!”.  No, positive results in this case signify confirmation of cancer.  The reality is, as a patient, you want negative biopsy results. The doctor continues, rattling off a number of abbreviated diagnostic tests, “We need to schedule a CT, PET scan, and take a look at BRAF, KRAS, and CEA markers. Make a follow-up appointment with me once you get those done”.  That was basically alphabet soup. Most patients do not have the health literacy needed to understand the medical jargon used during their appointment with their doctor. Many are too embarrassed or scared to interrupt and ask a question or ask for clarification. Doctors, when you see your patient wearing a “deer in headlights” look and NOT asking questions, stop and start again.

2.    Internet:  Patients typically start looking up their symptoms, diagnosis, and treatment options on the internet. While the patient is trying to be proactive, it may be very difficult for them to select medically credible sources of information. The downward spiral begins. The internet is filled is thousands of misleading sites, many with outdated content, incorrect statistics, deceiving information, and advertisements for herbal supplements and therapies that have no proven clinical efficacy nor are approved for use in patients.  In the midst of a cancer diagnosis, people are vulnerable and fall victim to resources that are too good to be true. Personally, I love when celebrities and people who have zero medical training become self-proclaimed experts in various disease states and begin advising what patients should be doing. Patients, please! Suzanne Somers is NOT a medical expert in cancer! A better choice would be to refer to the National Cancer Institute or the American Cancer Society.

3.    Finding A Specialist: Your doctor suspects you have cancer and tells you to see a specialist. He or she may offer a referral to a specialist. Is that person the right fit? What if the referral is not covered by your insurance? What if your doctor doesn’t refer anyone? Patients struggle with finding the right specialist to manage or confirm their diagnosis. Don’t just take your co-workers recommendation or neighbor’s experience as gold standard. Patients, make sure your doctor is at minimum board certified and specializing in the cancer in question. If you wouldn’t hire an unlicensed plumber to do all of the electrical work in your home, don’t schedule an appointment with a non-board certified plastic surgeon to manage a your breast cancer diagnosis.

4.     Medical Records: So you’ve scheduled an appointment with a specialist, such as a medical oncologist, and now you need to bring a copy of your medical records to the consultation.  Individuals have a right under HIPAA to request access to their medical records. The process should be straightforward, right? Nope. Many medical record requests are misplaced and never completed. Patients struggle to get updates on their requests over the phone as more and more health information departments are deferring to automated phone systems with no chance at getting connected directly to a person in the office. In many cases, only portions of requested medical records are released or incorrect information is being released. Some medical record requests are denied and never released. Patients are frustrated trying to get access to records that rightfully belong to them.  The advent of electronic health records will hopefully solve this problem one day. Ladies and gentleman, we are not there yet.

5.     Prescriptions: Many cancer patients undergoing active treatment take additional medications for co-morbid conditions. Some patients self-medicate with over-the-counter (OTC) medications, vitamins, supplements, and herbal remedies. Keeping track of all of the medications, what they are for, the doses, when and how they should be taken may become a daunting and confusing task.  During active treatment, cancer patients may be dealing with difficult side effects and may forget to take a dose or accidentally take too much of a particular drug. The results could be perilous. Patients often times fail to fully disclose all of the medications they take to their doctors which puts them at risk for drug interactions and for diminishing the efficacy of their prescribed regimens. Detailed record keeping of all medications and complete transparency is key for cancer patients’ safety and health.

     If you have experienced these or other places of confusion during your journey through cancer, I would love to hear your thoughts. These are just 5 examples of situations where hiring a private patient advocate would resolve any confusion one may be experiencing.  Stay tuned for part 2 of this series next week.