The Battle for Hospice and Choosing the Fight

Updated on December 7, 2018
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Kelly is a nurse practitioner, a patient advocate, and a type 1 diabetic who empathizes with patients living with a chronic disease.

What is the patient fighting for? To battle their disease with full and aggressive treatment or fighting to stay home?
What is the patient fighting for? To battle their disease with full and aggressive treatment or fighting to stay home? | Source

The Problem of "Revolving-Door" Patients

People don't come to the hospital to die. They come to find an answer to their medical problems, a cure for their illness, with the hopes they regain their health and return to their normal life.

Chronically ill patients with progressive and incurable diseases may eventually find themselves in the revolving doors of the hospital. As their condition progresses and their bodies begin to fail them, they find that they are continually readmitted for disease complications or deteriorating conditions. This is what's known as the revolving-door syndrome. These patients find themselves with decreasing likelihood of surviving until their next primary or specialist appointments and ultimately resort to seeking care for their acute on chronic diseases in the emergency departments.

Unfortunately, emergency departments only address the life-threatening issues and are not prepared—nor are they the appropriate setting—for patient and family education regarding disease management, medication management, and extensive review of goals of care. Chronically ill patients are quickly stabilized and sent home with an extensive list of medications, doctor appointments, and treatment plans with minimal education, other than urging close follow-up with the primary care physician.

A primary care provider is expected to complete an individualized treatment plan for a complex patient in under 15 minutes: An unrealistic expectation in the real world.
A primary care provider is expected to complete an individualized treatment plan for a complex patient in under 15 minutes: An unrealistic expectation in the real world. | Source

"Revolving Door" Patients Highlight Flaws in the Medical System

While hospitals and insurance companies are urging the discharge of chronically ill patients and complex cases faster than before, primary care providers are finding themselves overwhelmed and overbooked by patient appointments arranged in 15-minute time slots—often without a break to even breathe, let alone have a real conversation with a complex patient. The time needed to sit down with these patients who require a personalized treatment plan that includes extensive disease, medication education, and a review of goals of care, takes a lot longer than 15 minutes.

These patients find themselves lost in the healthcare system, with failing bodies, lack of knowledge about their medications, and unrealistic expectations of their quality of life their disease. Some patients believe that prescribed medications will cure their disease rather than manage it, and they often stop these medications once they feel better. Others, such as those with terminal cancer, believe their palliative chemotherapy will "cure" their cancer rather than provide symptom relief for an incurable disease. Miscommunication, misconceptions, lack of knowledge, and even denial can all play a part in these revolving-door patients.

While there's no question about repairing a broken hip in a healthy patient, questions regarding goals of care need to be asked in an elderly patient with complex medical conditions and a poor prognosis.
While there's no question about repairing a broken hip in a healthy patient, questions regarding goals of care need to be asked in an elderly patient with complex medical conditions and a poor prognosis. | Source

Modern Medicine and Technology Have Their Limitations

Misconceptions abound in the general population about the life-saving capability in the field of medicine. While modern medicine is saving more lives than ever, it is not necessarily addressing the quality of these "saved" lives. As technology advances, the field of medicine has been able to extend patients' lives far past any remaining shred of quality of life.

There are tracheostomies for patients who cannot wean off a ventilator, dialyses for failing kidneys, internal defibrillators in patients with weak and misfiring hearts, and temporary and permanent feeding tubes. Surgeons can remove skull bones in attempts to prevent brain death in a devastating stroke patient with uncertainty of recovery. Others can remove and rearrange intestines, leaving an ostomy in its place, which requires daily management and care. Eligible patients with failing organs can receive a transplant, but are required to take immunosuppressant drugs for the rest of their lives to prevent organ rejection, while placing them at higher risk for future infections and illnesses.

Despite all these interventions and more, the number of patients with chronic conditions continues to progress. While many of these patients are able to live happy and fulfilling lives with the help of medicine's latest interventions, there are many others that fail to experience the benefits of such advances in medicine due to the progressive and debilitating nature of their condition.

Modern medicine and technology has an end point, and when it's obvious that a patient's body is failing to respond, healthcare providers need to address this with their patients and their families.

If it's so easy to recognize the signs of a dying flower, why is it so hard for healthcare providers to discuss dying in their patients?
If it's so easy to recognize the signs of a dying flower, why is it so hard for healthcare providers to discuss dying in their patients? | Source

The Importance of Discussing Goals of Care

When a chronically ill patient finds themselves hospitalized for yet another time, it's time to review goals of care. This discussion far exceeds the question of "How are you feeling?" Goals of care in a chronically ill patient encompasses:

  • the review of advance directives
  • evaluation of patient and family knowledge of the condition
  • discussion of prognosis and expected course of the condition
  • their preference for life-saving treatments and potential interventions
  • review of the patient's values, goals and fears for the future
  • determining a designated decision-maker

Coming to Terms With Your Condition

One of the most important questions one can ask is, "What makes life worth living for you, and under what circumstances would life not be worth living?" If at all possible, it's important to ask these questions with the patient and family members that may be involved in their care as there are many misconceptions family members believe until they are discussed in the open.

While there are many more questions involved in reviewing goals of care, these aforementioned questions will help guide a healthcare provider in creating a personalized treatment plan for the patient that aligns with the patient's core values. Healthcare providers, patients, and families alike may unexpectedly find out that the patient's aggressive treatment plan may be inferior to a plan that emphasizes quality of life over quantity.

What is a fighter?
What is a fighter? | Source

You Are a Fighter, but What Are You Fighting For?

A fighter. This is the term that healthcare providers hear often when they start discussing goals of care with a patient and their family members. The patient states they're a fighter, but their bodies are losing the fight to their progressive disease. Or maybe it's the vocal member of the family who speaks for the patient and declares that the patient is a fighter and would never give up, regardless of the circumstances. Maybe at this point, the term fighter should be redefined.

The question to ask is, "What is the patient fighting for?" Is the patient fighting for an extension of life with further treatment? Maybe, they're hoping to manage their illness until they reach a milestone (e.g. a new grandchild, anniversary, or wedding). Maybe the patient is fighting to stay home because they realize that the multiple hospital readmissions, additional drugs, and ongoing treatments are no longer improving their quality of life.

The Role of Palliative Care

Palliative care offers an extra layer of support during this phase—the bridge between restorative care and maintaining a quality of life that is reasonable. Palliative care providers are humble, honest, and realistic when it comes to discussing goals of care with patients. They help patients and their families understand a condition's prognosis and future course. When appropriate, they help patients transition to hospice to maximize comfort and dignity for patients nearing the end of their lives.

The butterfly is a symbol for transformation, life, hope and spirit. Hospices across the country hold butterfly releases to honor those who are grieving and remember their loved ones.
The butterfly is a symbol for transformation, life, hope and spirit. Hospices across the country hold butterfly releases to honor those who are grieving and remember their loved ones. | Source

When to Admit Defeat

Misconceptions about hospice are not reserved to patients and the public alone. A physician friend of mine with countless years of experience once told me that he doesn't like the thought of hospice and never mentions this option to his patients.

Despite the knowledge that these patients carry a chronic, progressive, and incurable disease, he feels that discussing hospice care sends the message to the patient and family that he has given up when, in fact, he never gives up. I've seen his face after visiting his patients who ultimately pursue hospice, and it is one of pure defeat. He seems to internalize this feeling and punishes himself—as if he was an incompetent physician who was unable to cure an incurable disease.

Thankfully, this physician is not a palliative care provider. However, I have found that many healthcare providers find it quite difficult to admit defeat in the face of patients with progressively declining conditions and families desperately asking for answers.

What Do Palliative Care Providers Do?

Palliative care providers have a very different viewpoint on patients with chronic, progressive, and incurable conditions. Sometimes, it takes a physician to admit defeat in order for a palliative provider to come in and address the real issues at hand. Unlike other providers, palliative care providers seem to evaluate the patient before the disease. Instead of focusing on further medications or treatments that may prolong the patient's life, they ask personal questions about the patients values, their idea of quality of life and frankly, how to spend it best in their very short time left on earth.

Choosing hospice is not giving up; it's choosing death with comfort and dignity.
Choosing hospice is not giving up; it's choosing death with comfort and dignity. | Source

Why Choosing Hospice Is Not a Death Sentence

Choosing hospice is not a death sentence. It's a change in focus in the philosophy of patient care and experiencing the end of life. Whenever I bring up the word hospice, a look of shock is typically followed by patients and families. Some ask for a second opinion, some absolutely refuse the discussion, some request to think it over, and some sigh in relief.

What many people don't understand is that patients with these chronic, progressive, incurable conditions live under a lot of pressure to survive every single day. The pressure to maintain their umpteen medications, manage multiple specialist appointments, treatment regimens, lab testing, serial imaging studies, and follow strict diets and/or fluid restrictions all take a huge toll. They're tired and completely exhausted from keeping up with their diseases that the focus on their quality of life trails far behind the importance of disease maintenance.

While many patients admitted under hospice care are provided with a better quality of life for their short time left, there are those few patients who miraculously improve with hospice care. It's difficult to explain, but I've seen it multiple times as a healthcare provider. Once the medications, tests, lab draws, specialist visits are stopped, and the focus of care is switched to the quality of the patient's life rather than disease management, they improve.

Hospice Care May Be the Answer When Nothing Else Has Worked

These hospice patients start eating, they regain their weight, their vitals stabilize, and they feel better. On the other hand, some rally initially only to decline within a few weeks to months. But there are some that reach the six-month period, and their health has improved so drastically, they're no longer appropriate for hospice care. While these patients have graduated hospice, it doesn't mean their diseases have been cured. It's unfortunate that these graduates are no longer deemed eligible for hospice care; after all, it was this care that brought them such an improvement in their life.

Hospice is not something to be feared, rather, it changes the way we experience the end of life and dying.

Start the Conversation Early

As a healthcare provider, I can say the discussion of goals of care are often the last thing to be addressed when they should be the very first thing discussed in a patient's individualized treatment plan. Effective communication and empathetic discussions with our patients regarding prognosis, course of their condition, and end-of-life care can build trust without negatively affecting hope.

In fact, patients who discuss their end-of-life wishes with their providers have less fear and anxiety regarding their medical treatment. They also feel these providers better understand their personal choices and feel more enabled to direct their own care. An honest discussion with patients regarding goals of care can be the door to meaningful provider-patient relationships and overall improved quality of patient care. Patients are always fighting, but is up to their healthcare providers to understand what they are fighting for.

How Often Do You Discuss Goals of Care as a Patient or Provider?

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This content is for informational purposes only and does not substitute for formal and individualized diagnosis, prognosis, treatment, prescription, and/or dietary advice from a licensed medical professional. Do not stop or alter your current course of treatment. If pregnant or nursing, consult with a qualified provider on an individual basis. Seek immediate help if you are experiencing a medical emergency.

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    © 2018 Kelly Wagner

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