Palliative Life

By Mary Lauren Doggett, FNP

Probably the number one question I get when I tell people I am a Palliative Care Nurse Practitioner, right after the polite smile and nod that tells me they have no idea what I just said, is “Soooo, what do you do, exactly?”

(A close second to that is “How do you pronounce Palliative?” FYI: Per google, it’s /ˈpalēˌādiv,ˈpalēədiv/. Per everyone in Southern Middle Tennessee, it’s “Pall-ee-uh-tiv” or “Pall-uh-tif”, depending on preference.)

If you aren’t sure what I do either don’t feel badly. Many of the physicians and specialists that refer patients to me don’t fully understand it themselves. I like to think of Palliative Medicine as a fairly new discipline that has evolved over time into what we do today. Just like all other areas of health and medicine, things change, and our roles shift through time, but I’ll do my best to shed some light on this much needed area of expertise here.

First and foremost, Palliative Care is NOT hospice care.

I tell most of my patients that we are sort of like Hospice Care’s first cousin. We have several similarities, such as the general type of patients for which we provide care. In both cases, our patients suffer from serious, debilitating disease (always terminal or potentially terminal) and they come to us for help with symptom management and improving quality of life.

In both hospice and palliative care, patients are able to receive support that can improve not only their physical ailments, but those which seek to improve their emotional, spiritual and social lives as well. In both cases, patients can be cared for in their homes or places of residence (which can include long-term nursing care facilities, assisted living facilities, and personal home residences). There are some patients who are cared for in inpatient hospice facilities and hospitals, as well. There are also some palliative care teams within hospital systems.

With hospice, the patient has been determined in the clinicians’ best estimations based on available data and assessments to have a life expectancy of six months or less.

With Palliative Care, however, their life expectancy if often less clear.

For example, many of my palliative care patients have a diagnosis of Congestive Heart Failure (CHF) or Chronic Obstructive Pulmonary Disease (COPD). Both of these conditions are, unfortunately, incurable, and they will eventually lead to the patient’s death unless they die of something else first. But the rate at which they progress through the disease trajectory varies greatly from patient to patient. We know that these conditions are not curable, but not all CHF and COPD patients are hospice appropriate at diagnosis. They may have years of life left! Most likely, that life will have symptoms related to CHF and COPD that decrease their quality of life or ability to function. They will also likely be hospitalized more often than people without these conditions.

Enter Palliative Care

As the Palliative Care Nurse Practitioner, it is my job to help these patients have the best life possible as they progress through their disease. The nature of my position allows me to spend more time with each patient than their busy primary care providers, cardiologists and pulmonologists are able to do. During our visits, which last anywhere from 30 minutes to an hour or more (depending on LOTS of other factors, but that’s another post for another day), I am able to look deeply into the lives of these patients. I can see firsthand any barriers to their health that exist in their home environment. Do they have access to clean, running water? Is their home conducive to someone living with chronic conditions? Do they have anyone staying with them at night if they need it? Are they getting regular meals? Do they know how to use their inhaler? (Yes, sometimes people think you are supposed to exhale rather than inhale the medication because no one has ever taken the time to show them how to use the inhaler. You can bet THAT medication isn’t working.)

We review medications. I educate. I educate. And I educate again. Do they even know what CHF is? Do they know warning signs that an exacerbation may be coming on? Do they even know they have CHF?

I kid you not when I tell you I have had multiple referrals for patients with one disease or another, and when I go see them, they DON’T EVEN KNOW THEY HAVE THAT DIAGNOSIS. Not a single person has ever explained to them that they have a terminal illness.

Standing in the gaps

In palliative care, we take the time to fill in the gaps. I know primary care providers are insanely busy. I know, because I’ve been one. I know the hospital staff is so overwhelmed that the last thing they’re thinking about is providing education. I know, because I’ve been there, too.

That’s why palliative care is so important. We help put the puzzle pieces together that finally allows the patient to see the big picture of what is going on with them. We complement their other providers by explaining the “why” behind the orders they’ve been given.

We also have the time to delve into their symptoms to see what can be done about them. That’s what “palliation” is, after all. It means to alleviate pain and suffering in the absence of a cure for whatever is causing that pain and suffering.

The patient may have cancer that causes pain. Certainly, we will address that pain and attempt to lessen or completely remove it. But we’re also going to ask if that pain medication is causing constipation so we can address that, too. You know what else cancer causes? Anxiety. Insomnia. Depression. Guess who’s going to make sure those things are well-controlled. Your friendly Palliative Care Nurse Practitioner who took the time to ask you about it.

Hospice vs Palliative Care: Another distinction

Getting back to one of the differences between hospice and palliative care, one major difference is that with some conditions, such as cancer, patients may choose to pursue curative management. Not all cancer diagnoses are created equal, after all. Often there is not a clear prognosis, so the patient is offered various treatment options.

Many cancer patients choose to pursue treatments such as chemo, radiation and/or surgery in an effort to cure their cancer. Obviously, they are going to have symptoms that need addressing during this treatment, but they don’t want to do the comfort measures only route. They want as much comfort as possible while they seek treatment. Yes, their condition is potentially terminal, but we don’t have enough information to determine that for sure yet. These types of patients are very much appropriate for palliative care.

Alternatively, when a patient decides to pursue hospice care, they are acknowledging that they are no longer seeking curative care but are choosing to focus on comfort and quality of life. Sometimes this is because no further curative options exist, and the physician has recommended hospice. Sometimes the patient chooses to forgo treatment of a condition because they do not want to suffer the side effects associated with that treatment, such as with chemotherapy, radiation or major surgery, so they opt for comfort measures only until death, therefore they utilize hospice care.

Full Transparency

It is fair to say that many, if not MOST of my patients eventually transition to hospice care. But I want to be very clear when I say this. Are you listening? Palliative care does not equal “the step before hospice.” Let me say that again in another way. Just because a patient is in need of palliative care does not mean he or she is definitely going to transition to hospice some day. Sure, they might. And that may absolutely be the right answer for that patient.

But they might not. And that’s okay, too.

Good palliative care providers recognize that we are a discipline that stands on our own two feet. We are not required to be the precursor to hospice. Sometimes I know a patient needs hospice the moment I lay eyes on them for the first time. When this happens, I get a little annoyed. I get annoyed because this patient should have been referred to palliative care a long time ago. I could have helped them with the symptoms I’m sure they were already having. I could have helped them prepare in whatever way is appropriate for them for their impending death. If you have a patient that you think may need hospice in the next year or two, they probably would already be benefitting from palliative care.

But sometimes, our patients never transition to hospice because they don’t want to (for a million different reasons), and that’s okay. A quote I heard at a recent palliative care conference comes to mind:

“All hospice is palliative care, but not all palliative care is hospice.”

Not all “progress” is good

In the short three years I have been fully immersed in the world of palliative care, I have seen a LOT of changes. Staying up to date, efficient and in the forefront is often a good thing. But some changes may be more detrimental to the world of palliative care than helpful.

Palliative care has a rich history of patient advocacy. Dame Cicely Saunders recognized a need for care specifically geared for patients at the end of their lives, and she dedicated her life to creating what we now know as hospice and palliative medicine. It is because of her and many others like her that we in the field of palliative care are known for treating the patient, not the disease. We meet people where they are to help them get where they’re going. This takes time with the patient and their families, and sometimes it takes creativity and innovation.

Sir William Osler said it this way: A good physician treats the disease. A great physician treats the patient with the disease.

Because palliative care programs are not yet big sources of revenue for healthcare companies, they often exist for the simple reason that they can produce more hospice referrals. Hospice care is one of the most profitable healthcare services paid for by Medicare. For this reason, unfortunately, some palliative care programs have been reduced to funneling patients into their hospice program. Here is another quote from a recent palliative care conference really stuck with me.

“Hospice is an insurance benefit. Palliative care is a treatment philosophy.”

Hear me out. Transitioning patients from palliative care to hospice is NOT a bad thing. It is a huge part of what I do, and I am a fierce advocate for hospice care at end of life. As I mentioned before, many palliative care patients eventually transition to hospice care, and this is a wonderful thing. Usually, it is the most appropriate option for patients with a terminal illness when they reach the advanced stages of their disease. It can truly be a blessing for these patients and their families.

However, when palliative care programs shift their focus from providing excellent palliative care to increasing how many patients they transition to hospice each month, they begin an inevitable decline in quality. These programs stop looking at ways to improve symptom management in the individual patient and enhancing goals of care discussions, and they start focusing on barriers to hospice transitions. They will focus on data that improves reimbursement rather than improving care, and they will adopt medical records systems that expedite billing abilities even if it decreases vital time spent with patients.

More palliative referrals and good quality palliative care will organically increase hospice transitions, but for a good palliative care program, the hospice transitions shouldn’t be the focus. The focus should be on good, quality palliative care. It should be on improving the lives of our patients and their families. When we build that rapport and those relationships, those hospice transitions will increase because they’ll trust us when we tell them it’s time. And if they never want to transition to hospice, even if we disagree with that decision, they know we will care for them until the end, anyway.

In case you haven’t noticed, I’m a little protective of my specialty. I’m wary of anything or anyone that seeks to make us more like everyone else and less like the patient-focused, empathetic and holistic vision Cicely Saunders had so many years ago. She said it best when she said,

“The care of the dying demands all that we can do to enable patients to live until they die.”