My (REJECTED) Letter to the Editor

          As a researcher, I can fully appreciate the review process and recognize that there is simply only so much space allotted in any given journal. My recent submission was a Letter to the Editor of the New England Journal of Medicine (NEJM) regarding a perspective “Saying Goodbye to Lectures in Medical School- Paradigm Shift or Passing Fad?” by Schwartzstein et al, on alternatives to traditional teaching formats in medical school.  Given the elite status of the NEJM, I wasn’t entirely surprised to receive a rejection. Perhaps my simple little opinion wasn’t written in cream-of-the-crop style. The more concerning alternative is that the submission was rejected because it was not representative of the masses of submissions received or the popular vote. Perhaps no one else feels strongly about incorporating patients and care partners in the design and delivery of medical education. I find this gravely alarming.

            Revising the manner in which knowledge is delivered, i.e., virtually, in Q&A sessions, flipped classrooms, augmented reality, etc., addresses only part of the issue of sustained learning in medical trainees. It is important to incorporate the power and influence of storytelling to enhance the medical education experience. It is important for curated curricula to foster life-long learning not only in students, but also in the medical experts responsible for shaping young minds.  Current medical curricula offer learning as a 1 way street with information being disseminated from professors to students. Medical education is missing patient and care partner stories and experiences. More on that here: http://www.kevinmd.com/blog/2017/07/every-medical-student-needs-hear-patient-caregiver-stories.html

            Here’s my formal rejection from NEJM in response to my submission below. Does anyone else believe in the power of incorporating patient and care partner stories to enhance medical education?

Dear Dr. Cordovano,

I am sorry that we will not be able to publish your recent letter to the editor regarding the Schwartzstein article of 17-Aug-2017.  The space available for correspondence is very limited, and we must use our judgment to present a representative selection of the material received.  Many worthwhile communications must be declined for lack of space.

Thank you for your interest in the Journal.

Sincerely,

XXXXXXXX Editor

 

(Original Submission) To the Editor,

It was disappointing Schwartzstein et al. (Aug 17 issue)1 did not include patients and care partners in the design, development, and delivery of medical education. Students are only learning part of the story from cadavers and medical experts at respective institutions. We must foster the creation of curricula that are not only engaging, thought provoking, and evidence-based, but also unite patients and physicians, promote shared-decision making2, and delivery of compassionate care. Patients and care partners bring an authentic breathe of experience and perspective3 that textbooks and medical experts cannot impart or convey. It’s time to invest in participatory medicine and welcome patients and care partners to share their experiences living with disease significantly earlier into the careers of medical trainees. This model offers a unique opportunity to foster interactive, collaborative learning for all involved: medical trainees, seasoned medical experts, and patients and care partners. A change in the culture of medical education is more profound than revising curricula alone.

References:

1.     Schwartzstein R, Roberts D. Saying Goodbye to Lectures in Medical School- Paradigm Shift or Passing Fad? N Engl J Med 2017; 377: 605-607

2.     Barry M, Edgman-Levitan S. Shared Decision Making- The Pinnacle of Patient-Centered Care. N Engl J Med 2012; 366: 780-781

3.     Awdish R. A View from the Edge. N Eng J Med 2017; 376: 7-9

The Glaring Omission in Kymriah Drug Approval Press Releases

Novartis received F.D.A. approval for Kymriah (tisagenlecleucel), as the first CAR-T gene therapy approved in the US for pediatric and young adult patients with relapsed B-cell acute lymphoblastic leukemia (ALL).  Kymriah is being hailed as a paradigm and life changing therapy. Clinical studies have shown that within 3 months of treatment, patients achieved overall remission rates of 83%, survival of at least six months by 89%, with a 79% chance of survival of at least a year. These are tremendous clinical feats for patients with limited to no treatment options. The price for the single treatment therapy is $475,000. Novartis is working with the Centers for Medicaid and Medicare Services where patients will only be responsible for payment if they respond after 1 month of treatment. The company has also reported it would provide assistance to those without insurance and the underinsured.

The CEO of Novartis Oncology, Bruno Strigini, said, “We are so proud to be part of this historic moment in cancer treatment and are deeply grateful to our researchers, collaborators, and the patients and families who participated in the Kymriah clinical program(1). The majority of press releases (2-14) reporting the approval all had one glaring omission. Not a single press release formally recognized the importance of the patients that volunteered to participate in the trials. Not a single one expressed gratitude for the dedication of the care partners that committed their time to the success of these trials. Many trials fail to recruit and retain enough patients (15), leading to early termination, delays, or inadequate data for statistical reporting. Considering Kymriah is a treatment geared to a very specific subset population of ALL, it is incredible that these trials were able to accrue and retain the necessary numbers of patients to generate statistically significant findings.  Clinical trial participation requires dedication, sacrifice, and an uncanny belief in the unknown.  Imagine the degree of mental, physical, emotional, and spiritual duress a parent or guardian experiences in deciding whether their child, who is in the throes of a terminal cancer diagnosis, should participate in a clinical trial.  In the cases of pediatric and young adults patients, one parent, if not both, often need to significantly decrease the number of hours they may work, take an unpaid leave of absence, or leave their job permanently to assume the role of care partner for the patient so as to follow trial protocol. One can only imagine the impact on a single parent household. While there were clearly never seen before successes, with many precious lives saved, it wasn’t a miraculous ending for ever patient that was treated.  There are also life-threatening sides that come with treatment. Even the success stories may have had many dark moments along the way.

At a time when the healthcare industry is exploring and investing in initiatives to promote patient-centricity, it is important to acknowledge all stakeholders involved in successes such as these.  While Kymriah is undoubtedly a groundbreaking approval representative of the epitome of exceptional science, dedication, and innovation, let’s not forget to credit the patients and care partners who made this innovation and approval a reality as well. While researchers may have dedicated years of their careers developing the basic science and pharma may have invested close to a billion dollars to bring this living drug to market, the most invaluable part of Kymriah’s product lifecycle was patients’ volunteering their lives to the development of what’s being hailed as historic breakthrough science.

Resources:

1.     Novartis. (2017, Aug 30). Novartis received first ever FDA approval for a CAR-T cell therapy, Kymriah (tisagenlecleucel, CTL019), for children and young adults with B-cell ALL that is refractory or has relapsed at least twice [Press Release]. Retrieved from https://novartis.gcs-web.com/novartis-receives-fda-approval-for-KymriahTM

2.     Berkrot, B. (2017, Aug 30). Novartis gene therapy approval signals new cancer treatment era [Press Release]. Retrieved from http://in.reuters.com/article/us-novartis-fda-idINKCN1BA1ZY

3.     Cortez, M., Edney, A., &Paton, J. (2017, Aug 30). Breakthrough cancer therapy for dire cases gets FDA approval [Press Release]. Retrieved from https://www.bloomberg.com/news/articles/2017-08-30/breakthrough-genetic-treatment-for-dire-cancers-approved-by-fda

4.     The Food and Drug Administration. (2017, Aug 30). FDA approval brings first gene therapy to the United States [Press Release]. Retrieved from https://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm574058.htm

5.     Garde, D. (2017, Aug 30). Pioneering cancer drug, just approved, to cost $475,000- and analysts say it’s a bargain. [Press Release]. Retrieved from https://www.statnews.com/2017/08/30/novartis-car-t-cancer-approved/

6.     Glenza, J. (2017, Aug 30). US approves first cancer drug to use patient’s own cells- with a $475,000 price tag [Press Release]. Retrieved from https://www.theguardian.com/us-news/2017/aug/30/cancer-drug-kymriah-leukemia-novartis

7.     Grady, D. (2017, Aug 30). FDA approves first gene-altering leukemia treatment, costing $475,000 [Press Release]. Retrieved from https://www.nytimes.com/2017/08/30/health/gene-therapy-cancer.html?mcubz=3

8.     Herper, M. (2017, Aug 30). Novartis CEO’s dilemma: Is $475,000 too much for a leukemia breakthrough? Or is it not enough? [Press Release]. Retrieved from https://www.forbes.com/sites/matthewherper/2017/08/30/novartis-ceos-dilemma-is-475000-too-much-for-a-leukemia-breakthrough-or-is-it-not-enough/#772e4a77556e

9.     Nedleman, M. (2017, Aug 30). FDA announces first US gene therapy approval for cancer treatment [Press Release]. Retrieved from http://www.cnn.com/2017/08/30/health/fda-first-gene-therapy-leukemia/index.html

10. NPR. (2017, Aug 30). FDA approves first gene therapy for leukemia [Press Release]. Retrieved from http://www.npr.org/sections/health-shots/2017/08/30/547293551/fda-approves-first-gene-therapy-treatment-for-cancer

11. Ramsey, L. (2017, Aug 30). A medical breakthrough that hacks genes to fight cancer just got approved, and it’s the beginning ‘of a big new field of medicine’ [Press Release]. Retrieved from http://www.businessinsider.com/why-the-fda-approved-kymriah-a-car-t-cell-therapy-to-treat-cancer-2017-8

12. Scotti, A. (2017, Aug 31). New cancer drug’s ‘astronomical price’ only affordable for the 1% [Press Release]. Retrieved from http://www.nydailynews.com/life-style/health/new-cancer-drug-astronomical-price-affordable-1-article-1.3458071

13. Smith, M., Goodman, B. (2017, Aug 30). FDA approves first-of-its kind cancer treatment [Press Release]. Retrieved from http://www.webmd.com/cancer/news/20170830/fda-approves-breakthrough-cancer-treatment

14. Univeristy of Pennsylvania. (2017, Aug 30). FDA approves personalized cellular therapy for advanced leukemia developed by University of Pennsylvania and Children’s Hospital of Philadelphia Retrieved from https://www.pennmedicine.org/news/news-releases/2017/august/fda-approves-personalized-cellular-therapy-for-advanced-leukemia

15. Kolata, G. (2017, Aug 30).  A cancer conundrum: Too many drug trials, too few patients [Press Release]. Retrieved from https://www.nytimes.com/2017/08/12/health/cancer-drug-trials-encounter-a-problem-too-few-patients.html?mcubz=3

 

Robotics, Technology, and the Patient’s Clipboard

As a little girl, The Jetsons used to be one of my favorite shows to watch. An animated sitcom produced by Hanna-Barbera, The Jetsons featured a quaint family of 4 living in a space-age, futuristic era where daily life was rendered simpler by the glories of robotics, whimsical advancements, and high-tech innovations. I can still close my eyes and picture myself as a 6 year old, daydreaming about what the future would be like. 

Fast forward to August 2017. I’m watching a client struggle to wrestle their insurance card out of their wallet while juggling a clipboard with patient intake papers, her phone, and a water bottle.  Peripheral neuropathy stemming from many cancer treatments has made grasping things difficult and excruciatingly painful.  “But nothing has changed since last week, do you still need another copy of my insurance card?” asks the exasperated patient, still trying to free the pesky card from the tiny pocket in her wallet. “Office policy”, replies the receptionist curtly without looking up, “And fill out the forms because we are updating the records in our system”. There are 3 pages of forms. The patient has been coming here for over 2 years. All of the information is EXACTLY the same. She slowly fills out everything as diligently and neatly as she can, refusing my offer to help do it for her.

As a private patient advocate, I often accompany patients and their care partners to a broad spectrum of appointments, spanning follow-ups with their primary care physicians to specialists such as oncologists, cardiologists, or rheumatologists, to imaging centers for MRI’s, CAT scans, PET scans, and mammograms, to hospitals for pre-admission testing, surgical consultations, or procedures, or to phlebotomy labs for routine blood draws. I’ve observed hundreds, if not thousands, of patient encounters with front desk receptionists. No matter what the setting, there’s a common denominator routine that unites most of these experiences:

(front desk receptionist):  “Please fill out this paperwork (handing a clipboard to the patient) and I’ll need a copy of your insurance card.”

The moments that follow can be filed under “Complete Waste of Time”.

  • Patients can’t get their insurance card(s) out of their wallet.
  • Patients can’t find their insurance card in their wallet because the last time they were asked for it they were so flustered juggling the clipboard they shoved in a random spot.
  • Patients begin filling out the intake forms they’ve filled out many times before.
  • Patients realize they didn’t bring their glasses so they can’t actually read the form that’s also  often poorly photocopied.
  • The pen starts running out of ink a third of the way through.
  • Patients start looking for a new pen.
  • Some patients continue writing, pressing harder on the paper in hopes of reactivating the pen. Many curse, press harder, and rip the form.
  • Patients wait for the receptionist to return their insurance card so they may proceed to fill out the insurance information on the intake form.
  • Patients try to write their insurance information (ID number, group number, address, member phone number, etc.) on the miniscule lines on the form.
  • Patients can’t find the group number on the insurance card. (Insurance companies, take note!)

We are in a fascinating era of robotics, artificial intelligence, virtual/augmented reality, and digital technologies that fulfill people’s wildest imaginations.  The cancer surgical landscape is being transformed by advancements such as the da Vinci System (Intuitive Surgical), a robotically assisted surgical device bringing surgeons enhanced precision, dimension, and control while extending the possibility of minimally invasive surgery to patients https://www.intuitivesurgical.com/products/davinci_surgical_system/.  Robear (Riken), a bear-like nursing robot, can perform care-giving tasks such as lifting patients from their bed, transferring them to a wheelchair, and helping patients stand from a sitting position http://www.riken.jp/en/pr/press/2015/20150223_2/.  Hospital acquired infections may have met their match with Xenex, the germ-zapping robot, which uses high intensity pulsed ultraviolet light from xenon lamps to significantly decrease microbial loads in hospital patient rooms https://xenex.com/video-demos.  And who can resist the cuteness of the PARO seal (AIST), a therapeutic robot that fulfills unmet needs within the animal-assisted therapeutic space http://www.parorobots.com.  This is just a sampling of the wonders out there. There are even wide spread reports anticipating a robotic takeover and fears of automation replacing humans in a variety of sectors. With all of this pure genious rocket science and technology, can someone please explain to me how the hell patients are dealing with clipboards, insurance cards, fax machines, and paper chart folders with 3-hole punched paper records? Dear technology, you’ve missed the mark. You need to go back to the basics and fill in the (MAJOR) gaps before aspiring to have robots take over the world.

Many aspects of healthcare are not the futuristic Jetsons-like encounter I daydreamed of as a little girl. Dear Apple, for the love of all that is holy, please tell me there is an solution in the making that will allow patients to wave their phone Apple Pay-style to confirm basic demographic patient and insurance information so we can simplify the patient in-take process at every healthcare facility touch point. And while you are at it, lets have the capability to pay any co-pays with a second wave of the phone.  I mean enough with this cash, checks, or digging for a credit card nonsense.

Alternatively, at this juncture, it may be easier to perhaps bring in Pepper (SoftBank Robotics), the humanoid robot, into waiting rooms across the nation as an acting patient assistant to fill out the damn paperwork and get the insurance cards out for patients https://www.ald.softbankrobotics.com/en/robots/pepper. I’ll bet you a dollar it may easier than solving the current shortcomings and interoperability issues surrounding electronic health records (EHR) and patient portals.  It may also be more pleasant of an experience than many of the interactions I’ve witnessed with some front desk receptionists. Dear tech companies, looking forward to what you come up with. In the meantime, excuse me while I go find a pen that works for my client.

The Fix for Healthcare: A Tsunami

Dearest Medical Schools,

            Recently, at the 8th Annual Patient Experience Summit, Adrienne Boissy, MD, MA, Chief Experience Officer at Cleveland Clinic Health System, encouraged conference attendees to “dream bigger”.  Since then, I’ve been plagued with many sleepless nights and perhaps what many will consider borderline insanity.  I assure you that what I’m going to ask of you today is truly my version of dreaming bigger.  So here goes.  It’s time for you to invite patients to speak to promising young doctors during their time at your respective schools.  Not just for a volunteer opportunity.  Not just for a Patients’ Day event.  Not just for a photo-op for your quarterly donors newsletter.  You need to invite patients for regularly scheduled story sharing.  Don’t roll your eyes at me just yet.  It’s time to invest in patients and their stories to enrich your curated curriculums.  To clarify, by invest I mean not only to welcome patients to your exceptional facilities but to compensate them for their time as well.  Please don’t stop reading just yet.

            Your students are only learning half of the story from the cadavers and medical experts at your prestigious facilities.  For medical students to truly learn and understand the other half of the story, you will need to depart from the way things have always been done and revamp the medical school experience.  My dearest medical schools, you need to change the lens your students are looking through to learn. They need to understand the human repercussions of the diseases they so astutely diagnose.  They need to share and revel in the joys and tribulations of a parent whose child was miraculously saved.  Your young doctors need to experience the recollections of a spouse who tragically lost their loved one to a difficult battle with cancer.  Your knowledge hungry students need to hear first-hand the accounts of those living with painful, chronic diseases. Your students need to see the effects of avoiding difficult end-of-life conversations and the unnecessarily prolonged deaths adult children see their aging parents endure.  Students need to hear about successes of truly delivering consistent, quality care and the difference simple eye contact and active listening to a patient truly makes.  Young doctors-to-be need to hear first hand about near death or true back-from-the-dead experiences. It’s one thing to learn about death from a textbook or to see a patient code in the hospital. It’s another thing to be in a pin-drop silent room and hear the riveting account of those who have experienced their own death and have shockingly fought all odds to come back to tell their story.  These young, curious, motivated minds need to hear the accounts of everyday patients and the challenges they routinely face.

            There are two sides to every story.  Your students need to hear from those “non-compliant” patients that show poor medication adherence to understand their financial struggles, their difficulties getting to appointments and to the pharmacy, their challenges with suffering from debilitating side effects.  We can’t continue to ignore the impact of social determinants of health on patients.  Your young doctors also need to hear stories about wonderful care that’s being delivered across the nation, care that nurtures, supports, and empowers patients because there are incredible things happening everyday.  We need to inspire them because not all is lost and forsaken.  Your students also need to hear about terrible, undermining, exploitive care.  Care that left patients hurting, feeling lost, abandoned, taken advantage of, and hopeless.  Poor care and communication that brought patients back to the ER or ended up in medical errors and death.  Don’t forget about including doctors and nurses who have reversed roles and become patients themselves.  Their experiences will be uniquely different yet completely eye-opening.  Their takeaways will be pertinent.  I can assure you, the gut-wrenching emotional roller coaster that comes with the accounts of patients, such as Dr. Rana Awdish, Director of the Pulmonary Hypertension Program at Henry Ford Hospital and author of “In Shock”, Mary Elizabeth Williams, author of “A Series of Catastrophes & Miracles”, or of Dr. Lucy Kalanithi, widow and caregiver of Dr. Paul Kalanithi, “When Breath Becomes Air”, are priceless.  But these accounts only scratch the surface.  We shouldn’t only focus on well-published stories.  We need to seek the activated patients in our local communities, amplify their voices, and listen.   Really listen.  It’s in their messages that we will find solutions to heal our broken healthcare system.  Dearest medical schools, I ask you to be the early adopters our healthcare system is crying out for so desperately.  Give your students a medically cutting-edge education that is bathed in the human experience.  We need to dispel the myth that there simply isn’t time for such initiatives.  Time is always there.  It’s priorities that need to be adjusted. Be the disrupters in healthcare that reintroduce empathy into the sanctity of the doctor-patient relationship at it’s earliest kindling.

            Let’s not forget to include patient caregivers as they are the boots-on-the-ground at home when there isn’t a doctor or nurse in sight. (Don’t roll your eyes at me again.)  They dedicate more time to the patient than any individual doctor or nurse ever will.  Caregivers know the patient better than any doctor or nurse, and sometimes, even better than the patient themselves.  Invite them to share their stories, their trials, their heartaches, their happiness, and their grief.  I assure you the results will be lasting and profound.  If you still need convincing, you need to listen to Regina Holliday, founder of the Walking Gallery, speak.  Regina’s passion is fueled from her experiences advocating and caring for her husband, Fredrick Allen Holliday II, who died at 39 years of age from kidney cancer.  Together they faced endless complications stemming from poor care coordination, medical errors, lack of transparency, and poor access to his medical records.  Regina’s words will reverberate through your soul.  Again, there is a sea of caregivers waiting to share their stories.  I urge you, don’t wait a second longer to start reaching out to them.

            We need to start a movement, incorporating patients’ and caregivers’ stories and experiences into medical education and healthcare design. It’s a blatantly missing piece.  As you can see, without it healthcare is falling apart at the seams.   This can’t start and stop at medical schools.  We need to extend this to nursing students and medical technicians.  Anyone that plans on working in healthcare, from the chief of the department to the nurses, to the phlebotomy technician, to the custodial or food and beverage staff, every individual needs to hear patient and caregiver stories. Dearest medical schools, I’m asking you to be the drop of water that disrupts the surface of healthcare, the ripple of which will reach far and wide, outside of medical and nursing schools, outside of hospitals. If many medical schools participate, that ripple can become a tsunami. As far as I know, tsunamis are unstoppable.

            Empathic design and patient-centered care are buzzwords of all the rage. Empathic design isn’t about the soothing shade of white paint selected for a new hospital building.  It isn’t about incorporation of more natural light and miniature indoor gardens into hospital foyers. Patient-centered care isn’t just about improving Hospital Consumer Assessment of Healthcare Providers and Systems (HCAHPS) scores. Dearest medical schools, do you want an innovative, esteemed educational program that truly embraces empathic design and patient-centered care?  Invest in patients and their caregivers and let me know how it goes.  I bet you a dollar it’s going to be simply earth shattering and amazing.  Looking forward to witnessing the tsunami.

Best wishes,

Grace Cordovano, PhD

Aid-In-Dying: A Declaration of Independence from Terminal Cancer

          In February 2017, in the case of Arthur v. Dunn, the Supreme Court rejected the appeal of death row inmate, Thomas D. Arthur, to be executed by a firing squad, which offered a potentially less painful, faster death in comparison to lethal injection. In a dissent to the Supreme Court’s decision, Justice Sonia Sotomayer wrote, “In addition to being near instant, death by shooting may also be comparatively painless. Justice Sotomayer also stated, “Condemned prisoners, like Arthur, might find more dignity in an instantaneous death rather than prolonged torture on a medical gurney.”

         After reading the quoted statements, I was mentally consumed by the juxtaposition of the concept of dying with dignity in death row inmates vs. patients with terminal cancer. Lethal injection has been criticized as inhumane due to shortcomings in executions where inmates have experienced pain and suffering on the approximate scale of an hour or two from the time of initial drug administration.  Many terminally ill cancer patients suffer difficult, painful deaths for significantly longer than the “prolonged torture on a medical gurney” death row inmates have experienced as stated by Justice Sotomayer.

         Medical aid in dying (MAID) is the prescription of a lethal dose of medication by a physician to be taken voluntarily by a mentally competent, terminally ill patient. Oregon, Washington, Vermont, California, Colorado, and Washington D.C. have Death with Dignity statutes. Montana has the end-of-life option via Supreme Court ruling.  Safeguards require patients to be terminally ill adults who reside in of one of the participating states. Patients must be mentally competent, not depressed, capable of making medical decisions for themselves, and determined to be acting voluntarily. Patients must make 2 oral requests, 15 days apart followed by a written request.  Patients must ingest the medication themselves. Even if a patient is approved for a MAID prescription, they are under no obligation to ever use it. MAID is not euthanasia, which is illegal throughout the entire United States, as physicians do not directly administer the medication to patients. MAID is not assisted suicide. These patients are not suicidal and must be medically cleared of any mental health illness or potential depression as part of the vetting process.

         Terminally ill cancer patients are a unique subset of patients with distinctive unmet needs. Chemotherapy, radiation, immunotherapy, and surgery are associated with a broad spectrum of side effects, some which are permanently debilitating. The collateral damage ensued by these treatments are often silently accepted to be the price to pay for choosing to fight cancer in hopes of preserving life. Unfortunately, some cancers continue to ravage on in utter defiance of every gold-standard treatment and medical strategy that is employed. When all options have been exhausted, patients are referred to hospice for comfort care. Hospice provides significant benefits to both the patient and their loved ones. But what happens when hospice fails to bring comfort, pain relief, and peace to terminally ill cancer patients?

          Opponents of MAID state the practice is unnecessary as hospice can manage all pain associated with end-of-life. Unfortunately, it is well known that many terminal cancer patients die after prolonged suffering in pain while in the care of hospice. Cancer pain management is complex, comprised of a collection of cancer pain syndromes that may require multidisciplinary expertise for management. Hospice staff may not be adequately trained to manage multifaceted situations presented by terminally ill cancer patients. Hospice also has limitations that impact their level and quality of care. Medicare may not cover services and medications that are most needed in terminally ill cancer patients. Restrictive enrollment policies prevent enrollment of patients utilizing palliative chemotherapy or radiation.  It’s interesting to note that in a society that values life, terminally ill patients are required to forego all curative therapies in order to qualify for hospice. Many facilities are understaffed, with many reports of lack of continuous support by hospice during times of patient crisis. Distressed cancer patients receiving hospice care at home are often transported to the emergency room and admitted. There they are subjected to needles and IV’s, often over-treated and over-medicated. Doctors may resuscitate, crack ribs, intubate, perhaps do an emergency surgery or procedure, or place the person on a ventilator. Hospitalized for their remaining days or weeks, patients develop bedsores, pneumonia, delirium, and increased risks for falls. They are heavily medicated and hooked up to more monitors and machines than they ever could have imagined.

          Physicians who are opponents of MAID state the practice violates the doctor-patient relationship and their Hippocratic vow to do no harm.  Perhaps in subsets of cancer patients with terminal disease, the harm has already been done. These are patients who have followed the recommendations of evidence-based medicine, often having endured multiple rounds of chemotherapy and are now consequently plagued by side effects such as crippling bone and joint pain or excruciating peripheral neuropathy. These are patients who may have endured multiple rounds of radiation and consequently may have permanent, unbearable damage to the esophagus, brain, or heart. These terminally ill cancer patients may have endured numerous surgeries and resections of their tumors, often sacrificing healthy organs and tissue in pursuit of life. On top of mounting chronic treatment side effects and uncontrolled disease, perhaps they have lost control of their bowels or have a colostomy bag. Some patients experience severe nausea and vomiting requiring a percutaneous endoscopic gastronomy (PEG) tube for relief. A previous client of mine with terminal cancer referred to himself as a medically altered, part artificially functioning version of his pre-cancer self, forced to endure prolonged and unnatural suffering.        

            Most patients seeking MAID are not primarily looking for relief of physical pain and suffering. At the time they request MAID, they greatly value their lives and quality of life and are seeking to preserve the authenticity of their life. Many seek preservation of autonomy, dignity, and compassion, virtues that elude the tangible framework of medical treatment and care. Many fear the loss of control and medical manipulation described above. In the cases when medicine cannot cure a cancer, where palliative care is not enough to manage treatment side effects, where hospice cannot provide solace and support, and hospitals continue to admit and readmit, prolonging death unnaturally in the last days and weeks of a cancer patient’s life, what choices do terminal cancer patients truly have at the end of their life?

          Not all terminally ill cancer patients will seek or need MAID.  MAID should not be viewed as the primary resource for end-of-life care, but rather another choice in the delicate decision process. For many terminally ill cancer patients, MAID will never be a consideration due to personal, cultural, or religious beliefs. For those with access, palliative care may be enough to manage cancer patients’ treatment side effects while they are undergoing cancer treatment. For most patients, hospice will be a beautiful experience and should lead to a supported, peaceful death. We cannot, however, continue to turn a blind eye to the populations of terminally ill cancer patients that wish for another choice. Terminally ill cancer patients should have a right to be given the choice to request MAID within the proper safeguards. And even if they are granted the choice, not all will exercise that right.  But having the choice and option may make all the difference. Doctors should not be forced to participate in writing lethal prescriptions and in the same respect, doctors who do should not be ostracized by the medical community, accused of homicide, or slandered by the media. Legal, medical, and religious organizations all have a responsibility to contribute and continue to improve end-of-life care. But let’s empower the actual terminal cancer patient with a choice FIRST.

Cancer, Love, And The Pink Elephant In The Room

     We are living in a world that is resolute to cure cancer. From the Cancer Moonshot to precision medicine, to liquid biopsies and the quest for earlier detection, to innovative technologies and cutting-edge equipment, to the incorporation of artificial intelligence (AI) to analyze the vast quantities of data generated daily: it is a full-on war to eradicate cancer.  No one can doubt the wonder and excitement transpiring in the cancer space everyday. There is nothing better than reading reports of patients with terminal cancer attaining miraculous remissions, especially when all options were exhausted and all hope was seemingly lost.  And yet, in the process of being full steam ahead to end cancer, we’ve lost sight of a few integral parameters in the cancer treatment paradigm. In the focus to eradicate cancer, patients’ sexual health and self-image have fallen off to the periphery and become the pink elephant in the room.

     Cancer has a significant impact on patients’ sexual health and conceptions of self-image. Most cancer patients say that their doctors avoid talking about sexual health and self-image concerns and they don’t have the courage to mention it. Even the National Comprehensive Cancer Network’s (NCCN) website, under the topic “Sexual Health for Cancer Survivors” literally states “Doctors do not usually talk with survivors about sexual problems.” WHAT? WHY NOT? We need to do better. Cancer treatments are responsible for a broad spectrum of side effects.  Hormone deprivation may cause a loss of or decreased libido.  Chemotherapy may cause hair loss, nausea, vomiting, fatigue, and early menopause.  Surgical procedures may leave the patient’s body manipulated, numb, reconstructed, and scarred.  None of these are surprising or uncommon. Patients struggle with their new physical appearance and the emotional impact these changes impart. Patients’ partners may be afraid of hurting their significant other or may also struggle with how to deal with all of these new changes. Young or single patients may worry about the future of finding a partner after cancer and consequent intimacy and fertility issues. There are many options available to help patients improve sexual health and intimacy. But these issues need to be TALKED about. Many patients are reluctant to discuss their concerns with their doctors out of embarrassment. Most patients feel treating their cancer is the priority and they should feel lucky to be alive let alone trying to salvage intimacy and their self-regard. Doctors may mistakenly assume that if the topic was important, patients would start the conversation. This Valentine’s Day, let’s vow to escort the pink elephant out of the room, stop the stigma and tiptoeing around cancer patients’ sexual health and self-image needs, and bring better mental health and psycho-oncology support to our patients. Lord knows cancer patients need more love than ever.

     Psycho-oncology and sexual health support services should not be regarded as a nice-to-have or a luxury for cancer patients currently undergoing or having completed treatment. They need be regarded as a right and better integrated into routine cancer care.  Significant changes need to be made as to how we are treating and supporting cancer patients. In the same way that cancer patients can get their blood drawn on one floor, imaging done on another, psycho-oncology and sexual health support services should be readily available, with doors open and professionals and resources awaiting.  Patients need the opportunity to discuss these concerns in a safe and welcoming environment during their appointments with their oncologist. Cancer centers need to create an open forum for addressing self-image and sexual health issues so as to normalize the problem. Let’s engage the expertise of thought leaders in cancer sexual health and survivorship to speak to patients in educational seminars or videos for patients to access and discuss with their care team.  Perhaps nurses can assist in educating patients on the impact treatments may have on patients’ sexual health, fertility, and self-image. Let’s throw the door open and discuss products and tools patients should be utilizing. This is not taboo. This is a part of human life and only some of the consequences of this horrible thing called cancer. We need do better to ease the burden.

     Let this Valentine’s Day be the icebreaker that encourages patients to talk to their doctors about how cancer is impacting their sexual health and self-image.  Patients, you do not need to be ashamed and suffer in silence. Doctors, let this Valentine’s Day be the end to your reluctance to address the sexual health, intimacy, and self-image needs of your patients. Time to turn that pink elephant in your exam room into a cupid to foster self-love, love in relationships, and hopes for love in the future.  Oh, and dear National Comprehensive Cancer Network, perhaps it’s time to revise the statement: Doctors do not usually talk with survivors about sexual problems. We are all adults here. 

The Metamorphosis of the Cancer Center Waiting Room

     I’ve been losing sleep for the past few nights over this crazy idea. What if there were no waiting rooms at cancer centers? It’s time for a metamorphosis.  Great strives are being made to improve patient care and patient satisfaction scores. Patient-centered care is all the rage. Surveys show that patient waiting rooms are influencers of patient satisfaction. The patient waiting room is a stagnant concept that hasn’t evolved much since its inception eons ago. Reported improvements to waiting rooms primarily address aesthetics, with better seating arrangements, good lighting, use of comfortable furniture, providing complementary Wi-Fi, increasing the number of available power sources, and decorating with soothing visuals of nature. Oh, and a fish tank and coffee maker.

     While aesthetics are important, we need to reexamine the functionality of waiting rooms.  What is their sole purpose? Waiting rooms serve as a placeholder in preparation for a scheduled appointment or procedure. Unexpected emergencies, surgeries, and urgent phone calls from other doctors, hospitals, pharmacies, and ailing patients are responsible for delays in a doctor’s schedule. Preventable reasons for delays include poor office workflow, lack of time management, and chronic overscheduling of patient appointments.  Patients cause delays by being tardy or by bringing up concerning medical issues at the end of their appointment (“oh by the way doc, I had severe chest pains all morning and shortness of breathe).  Whatever the reason, thousands of cancer patients across America are spending hours in waiting rooms daily. Sitting, worrying, and trying to figure out the damn coffee maker only to find there is no milk or sugar.

     Patients detest waiting and feel that their doctors do not value their time.  Waiting, especially at a cancer center, adds additional anxiety to an already stressful situation. What if we could change patients’ perceptions of wait times? Waiting rooms at cancer centers are an untapped resource for improving patient-centered care.  What if waiting rooms were transformed into patient engagement spaces? What if when patients checked in for their appointment they used an app on their smartphone to keep them updated with their approximate wait time? While we are talking crazy, let’s stop calling it “wait time” and refer to it as patient engagement time. What if patients were given a selection of curated activities to partake in until their appointment? Why would we do that you ask? We are doing a very poor job in addressing the mental health needs of cancer patients.

     The American Cancer Society (ACS), National Cancer Institute (NCI), and the National Comprehensive Cancer Network (NCCN) acknowledge that cancer impacts a patient’s mental and emotional health. Fear, anxiety, and distress may cause increasing psychological and physical effects, leading to alienation, depression, decreased quality of life, and poorer outcomes. Patients are encouraged to pursue support groups and counseling.  Unfortunately, many have limited access or availability of resources at their cancer center or within their community.  Many patients are unable to take additional time off from work or from home life responsibilities. Most patients say they simply do not have time for cancer, let alone setting time aside for counseling and support to deal cancer’s fallout. We can’t keep focusing solely on the clinical outcomes of cancer and not the patient as a whole. Most cancer centers have the specialists they need to manage their patients’ cancers onsite. Patients can see their respective doctors, have their blood work drawn in the office lab, get imaging on the next floor, and receive treatment all in roughly the same place. I guarantee most of these cancer patients would benefit from mental health support services. So, why are mental health support services off somewhere in a silo on their own, if anywhere at all? Mental health in cancer patients needs to be made a priority.

     How can we improve patient access to and uptake of mental health supportive services? What if while patients were waiting for their appointment they could attend an ongoing support group meeting, live or via a teleconference, in one of the newly defined patient engagement spaces? What if patients could participate in a group guided meditation or tai chi? What if there was a patient engagement space dedicated to art therapy, where patients could create alongside other patients? What if patients could experience the unconditional love of a therapy dog? Exercise is highly recommended in cancer patients for a number of reasons. What if there was a walking path around the perimeter of the patient engagement rooms? What if each month the patient with the highest number of steps got a credit on their account for $100? Complete insanity, right? What if a patient had enough time to participate in all of these options prior to their scheduled appointment?  Sounds like a happier, better supported, and more satisfied patient to me (#PatientCenteredCare). I’ve personally spent many hours in the waiting rooms of a prestigious cancer center as experts worked through verifying my cancer diagnosis over the course of 4 months. These were the longest 4 months of my life, though in the end, I was ruled a misdiagnosis and cancer-free. Looking back, I’d much rather have had any of these patient engagement options than having had sat in that good ol’ fashioned waiting room alone in my thoughts, contemplating making deals with the devil.

     There are 69 NCI-designated cancer centers in the United States.  Centers of excellence such as Memorial Sloan-Kettering Cancer Center, University of Michigan Comprehensive Cancer Center, and Dana-Farber/Harvard Cancer Center currently offer a variety of exceptional psycho-oncology and integrative services to support their cancer patients’ emotional and mental health needs. While the availability of psycho-oncology and integrative services at certain cancer centers is cutting-edge and commendable, it’s not enough and not reaching enough patients. We need to improve access and expand these offerings to all of the approximately 1500 cancer centers nationwide, not just the NCI-designated centers of excellence.  Mental health support should not be a luxury or nice to have but a basic human right. We need to not only expand availabilities across all cancer centers but also make it easier for patients to access and proactively participate. We need to bring mental health support to the patient. What better way than providing an opportunity for engagement while the patient is on-site at the cancer center waiting for an appointment?

     I know what you are thinking (Is she off her rocker?). Redesigning waiting rooms in cancer centers and creating patient engagement spaces? Replacing magazine subscriptions with art therapy? Trading fish tanks for therapy dogs? Removing furniture and encouraging guided meditation and tai chi? Trading the TV for digital platforms and teleconferencing seminars to improve patient education? Replacing the concept of waiting for an appointment and promoting walking? Sounds like madness. But hey, I’m not the one that decided to stick every cancer patient in America in an empty room with some magazines, a coffee maker, and a fish tank to fill out papers for medical records they’ll probably never be able to get access to when they need them anyway (but that one is for another day). These outrageous ideas are by no means a solution to addressing all mental health unmet needs in cancer patients. But it’s a start and it’s definitely time for a metamorphosis.

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.