My “Why?” for Palliative Care

“Is the patient terminal?” the receptionist asked matter-of-factly.

Terminal. I found myself stumbling across the word. Such an inanimate, cold, empty word. Newark airport popped into my mind. Terminal is a word used to describe the part of the airport your flight is departing from or arriving at, not to describe an incredibly delicate, devastating place in a person’s life with a cancer diagnosis.

“No, this person is not terminal. This person is suffering. This person has advanced cancer and is struggling with managing treatment-related side effects, pain, and anxiety.” We would like to schedule a new patient appointment to see a palliative care specialist.” I said.

 “We don’t do that here. Talk to the oncologist. That’s their job. We only see patients who are terminal.”

Terminal. I double checked the number I dialed. Did I call the wrong number? Sure enough, this was the number to the hospital’s palliative care department. 

I pushed back and inquired further, “This patient needs support in addition to what the oncology team is doing. Treatment has had an immense impact on his quality of life. He needs mental health and nutritional support as well as help with managing pain that’s been poorly controlled. The family needs emotional and spiritual support.”

 “Ma’am, the only thing we do here is offer invasive treatments, like injections and nerve blocks. We don’t accept any other patients. Feel free to call us back when the patient is terminal.” The call ended.

I felt gutted and equally frustrated. (And for the record, I wouldn’t call them back even if the patient entered the end of their life.)

 As an advocate who has had the privilege to walk beside so many patients, family included, throughout their lives with cancer, there is no denying the difference palliative care makes. Well managed treatment side effects as well as challenges from multiple co-morbidities, nutritional counseling, mental health, emotional, and spiritual support, and open conversations on advanced care planning and end-of-life wishes are the difference between cancer care and life-focused care.

 I see the suffering people go through at home during treatment. Many are afraid to say anything to their doctors and care team. Their treatments were described to them upfront as generally “well tolerated”. Stigma, shame, and fear of being judged are real.

When you’ve been vomiting around the clock even with anti-emetics, dragging yourself to the bathroom with diarrhea, and unable to eat because of the dozens of mouth sores that make eating shards of glass seems like child’s play, you feel like a failure for not handling “well tolerated” treatment well. Patients write down notes about their side effects, make tallies of the times they’ve gotten sick, jot down what they’ve ate in hopes of mustering up the courage to bring it up at their next follow-up appointment. But you see, so many don’t make it to the next follow-up appointment because they end up in the ER one night when their body simply couldn’t take it anymore. They collapse from dehydration, malnutrition, fatigue, and the hell that is cancer. It’s a horrible, helpless situation for both the patient and family. 

If we can treat a cancer aggressively, why can’t we treat the person just as aggressively with life-focused care? Palliative care needs to be incorporated earlier in treatment planning and be a holistic extension of the care team. This does not take away from the work of the oncology team but only enhances it. 

The majority of cancer care and recovery happens at home. Palliative care can’t be only offered within the traditional walls of medicine on an appointment basis when one is “terminal”. Palliative care needs to be offered at the new point of care: where the patient is. There is no doubt that digital tech needs to be leveraged to enhance cancer care, to improve quality of life at home, to support the carepartners and family, and to proactively managed treatment-related side effects. 

Palliative care needs to rebrand and refresh. It’s not just for those at the end of their life. It’s not just for invasive procedures. It needs to leverage technology to meet patients where they are. It needs to be recognized as life-focused care.  Not feared as the end of the road. 

 When I came across the opportunity to apply as an e-Patient Ambassador for the Coalition for Compassionate Care of California, where they incubate and share models to improve access to quality care at the local, state, and national level, I jumped at the chance. I’m thrilled to have been selected as 1 of 5 new e-Patient Ambassadors* from across the US working towards improving palliative care, for not only patients with cancer, but for all people. I am eager to immerse myself in the pioneering work being done to elevate patient care. I look forward to bringing my lived experiences and expertise to the discussions. I am eager to collaborate to make technology play a greater role in palliative care. 

*The CCCC project is funded through Patient-Centered Outcomes Research Institute® (PCORI®) Eugene Washington PCORI Engagement Award #8621-CCCC. 

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.

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?