"What is palliative care? Is that an actual specialty?"
After people receive a referral from their primary care physician (PCP) in clinic or primary medical team in the hospital to see a palliative care specialist, they tend to do a quick Google search to look up "palliative care." When I ask them what they read, the response is fairly common.
"I looked it up, but I still don't get it."
Like cardiology is a medical specialty that focuses on care for people with heart related problems, so palliative care is a medical specialty with its own focus. Palliative care specialists focus on providing care for people who are processing a new life changing diagnosis, living with a severe illness, or declining with an end stage medical disease.
I describe six main things that a palliative care specialist does.
1. The palliative care specialist communicates about difficult, and sometimes awkward, topics.
Palliative care specialists specialize in both big picture and what if conversations. They try their best to interpret the medical situation so that everyone - patient, family, and healthcare teams - are on the same page.
A husband might feel encouraged to see his wife perk up after "two IV medications" are added to boost her blood pressure and circulation to the brain. The intensive care unit (ICU) team may be concerned that his wife's organs are failing due to low blood pressure and lack of circulation to those organs, thus requiring life support medications. A daughter might say, "What we're going through is worth it because we're going to cure her cancer," while her mother's oncologist is writing in the chart, "The purpose of this chemotherapy is not curative. The purpose is to prolong life."
Palliative care specialists ascertain what a person and their family understands, clarify misunderstandings, and share additional information such as what the medical specialists think are realistic outcomes. Will this person likely be able to walk again? Will this person likely regain their mental capability? Are the medical teams expecting this person to repeatedly return to the hospital due to complications from their treatment or worsening from their disease? Are the medical teams worried this person will not leave the ICU alive?
Sometimes sharing crucial information includes sharing prognostic, or life expectancy, ranges such as hours to days, days to weeks, weeks to months, or months to years (read Post 15: What's My Heaven ETA? - The Who, What, Where, When, Why, and How in Asking About Prognosis).
Palliative care specialists also encourage a person and their family to advocate for themselves and help them frame questions about potential risks, potential burdens, and potential benefits of an offered medication or procedure (read Post 16: Medical Decision Making 101).
For how many weeks will I need to arrange daily transportation to get to radiation? Will this treatment sap my energy and keep me from playing with my grandchildren? How long will I have to do rehab after this surgery and not be able to care for my bedbound husband? How much more life is this treatment supposed to give me, a few more months or ten more years?
Palliative care specialists help a person and their family deliberate whether potential benefits outweigh potential risks and burdens.
2. The palliative care specialist recommends a treatment plan individualized to a person's most important values and goals of care (read Post 54: Why Should I Care about My "Goals of Care?").
Two women receive the same advanced cancer diagnosis. The 81 year old woman who loves to garden - and whose husband had died from lung cancer "after suffering a miserable 3 months with chemotherapy" - prioritizes independence and energy for as long as possible before "God is ready to take me too." The 60 year old woman fervently wishes to hold her first grandbaby, due in seven months. One starts cancer therapy in an effort to extend her prognosis a few more months, and the other cancels her oncology follow up appointment to minimize time away from home and asks her PCP to manage her intermittent side pain.
The two women had differing values and priorities, also known as goals of care, that led to differing treatment plans (Read Post 7: I Want the Best Care Possible for ME - Part 1 of 2).
Palliative care specialists help a person and their family articulate their most important values, priorities, and goals of care (read Post 37: "Do Everything" and Other Misconstrued Phrases). They help the person and their family to step back from a mentally difficult and emotionally draining medical situation to look at the big picture. They learn what a patient is like as a person, not just as a medical diagnosis, to get a sense of the person's values. This may include learning about a person's work both inside and outside the home, their education, their family, their friends, their social life, their hobbies, their spirituality, their faith, their hopes, and their fears.
They ask, "What is motivating you to take this medical path? What are you fighting for? What are you hoping to achieve or maintain? What is most important to you to maintain some quality of life?"
Holding a goals of care conversation is one of the central tasks of the palliative care specialist, akin to reading brain MRIs for a stroke neurologist. Depending on the healthcare setting, the palliative care specialist shares the person's or family's values and goals of care with other healthcare providers or encourages the person to share their goals with their family and other healthcare providers.
The default goal of care in the medical community in the United States is to "keep the patient alive for as long as possible." If a person's or family's priorities are different, they must communicate this with their healthcare providers and their close family and friends. Otherwise, they may end up undergoing treatments that move them farther away from their goals.
3. The palliative care specialist explains what exactly are advance directives and (eagerly) assists in completing advance directive forms.
"I have those. I already told my family I want to be cremated. Is that what you're talking about?'
Advance directives are not wills. Advance directives are legal documents that are supposed to convey a person's wishes about the type of care they would want to receive in a "terminal" medical situation. There are several different forms (including the living will, which is not actually a will).
Because a person, their family, and numerous specialists may focus on day to day medical catastrophes, they may not realize that the person is in a "terminal" situation (read Post 9: How Terminal is Terminal?). One person's definition of "terminal" may mean a devastating diagnosis with a prognosis of months. Another person's definition of "terminal" may mean lying somnolent in bed with a prognosis of days. For this reason, the living will which asks about how a person would want to be treated if experiencing a "terminal" condition is frequently disregarded, either intentionally or unintentionally (read Post 32: When the Living Will is Not Helpful).
Palliative care specialists focus on the forms that ask a person to name a medical power of attorney (MPOA), also known as a medical durable power of attorney (MDPOA) in some states [Read Post 4: Eleven Common Myths About the Medical Power of Attorney (MPOA)].
They also focus on the forms that order an out of hospital do not resuscitate (OOH DNR), also known as emergency medical services do not resuscitate (EMS DNR) or durable do not resuscitate (durable DNR) in some states.
Unfortunately, there are multiple names, differing by state, indicating the same advance directive concepts. For the sake of clarity, I will use the terms MPOA and OOH DNR.
Though the advance directive forms to complete an MPOA or OOH DNR differ among states, the questions themselves remain the same.
When I want to ask a person whom they would want to designate as their MPOA, I ask, “If tomorrow you were delirious from a severe infection or unconscious from a car accident or stroke, whom would you trust to talk to the doctors about your health and make decisions about how the doctors should treat your body until your mind cleared up?”
Code status refers to a person's cardiopulmonary resuscitation (CPR) wishes, specifically if that patient would want resuscitation attempts (which would be "Full Code") or be allowed a natural death (AND), which is the same as do not attempt resuscitation (DNAR or DNR) (Read Post 5: CPR on TV versus CPR in Real Life - Three Ways They Differ).
When I want to ask a patient about their resuscitation wishes, I try to describe a realistic and open ended scenario. “If paramedics are called for someone who is unresponsive, they check for a pulse. If there is a pulse and the person is alive, the person is stabilized and taken by ambulance to the hospital. If there is no pulse and the person has died, in the United States, paramedics immediately attempt resuscitation, or CPR, to try to get the heart beating normally again.
If the paramedics are able to resuscitate and get the heart beating again, they place a breathing tube down the throat (intubation) and transfer the person to the hospital. The person will be on life support, also called the ventilator, in the intensive care unit (ICU). Doctors in the ICU try to stabilize the person and get them off life support, out of the ICU, and out of the hospital.
If the person was very sick or their body was weak before their heart stopped, or their brain did not get oxygen for a long period of time before being resuscitated, it is difficult for the doctors to stabilize the person and get them off life support and out of the hospital. That’s when doctors have to sit down with the MPOA and family and ask, ‘What would this person want? What would be quality of life for this person?'
Some people say they would want all resuscitation attempts and that they have already discussed their priorities and quality of life with their family. They have already discussed what to fight for and when to let go. This would be a "Full Code." Other people say that when their heart stops, they have died. That is their time, and they want a natural death. They would want their body to be left in peace. This would be a 'Do Not Attempt Resuscitation.'"
For patients in the hospital, the MPOA question remains the same. The above code status question about resuscitation wishes would replace “paramedics” with “doctors and nurses,” but otherwise remain the same.
Palliative care specialists would then assist in completing MPOA forms. If a person's wishes were in line with a natural death, they would also assist with completing OOH DNR forms (Read Post 6: Who Do I Tell If My Mom Does Not Want Resuscitation Attempts? - A Three Step Process).
4. The palliative care specialist attempts to improve quality of life with symptoms management.
Most physicians are able to prescribe or recommend medications for common physical and psychiatric symptoms. Common symptoms include pain (read Post 31: Three Common Misconceptions about Opioid "Pain Pills"), nausea, shortness of breath, constipation, diarrhea, depression, and anxiety.
Sometimes symptoms are complicated or difficult to control despite common treatment regimens, especially in patients with severe illness or advanced medical disease. Palliative care specialists have training, experience, and willingness to attempt less common treatment regimens for severe or intractable symptoms in an attempt to improve quality of life for the person with severe illness.
Frequently symptoms such as intractable pain or complicated depression have more than a physical or medical cause (read Post 86: How Has Your Physical Health Affected Your Spiritual Health?). A person grappling with existential distress, questioning their faith, or attempting to cope with toxic relationships may experience physical symptoms that are manifestations of their emotional, spiritual, or social struggle. This person may complain of anxiety, and a healthcare provider may prescribe medication without further questioning. However, an anxiety pill alone will likely not ease this person's suffering.
Ideally, palliative care specialists are not seeing patients by themselves and rather as part of a team consisting of other disciplines. Other disciplines may include at least a chaplain and a social worker to assist in addressing the more complicated symptoms rooted in spiritual or social distress, as well as a pharmacist or counselor.
I have practiced as a member of a palliative care team in a hospital in which the physician worked hand in hand with the nurse practitioner, physician assistant, social worker, chaplain, music therapist, and art therapist, seeing patients together and if not, at least discussing cases together daily as a team to obtain the expertise of other disciplines.
I have practiced as a member of a palliative care team, consisting only of physicians and nurse practitioners, in a hospital, seeing patients solo and briefly discussing cases once weekly.
I have practiced as a member of an outpatient palliative care team, consisting of physicians, nurse practitioners, and nurses who primarily made home visits. The team also included a social worker to assist with addressing social issues such as lack of home safety, lack of food, lack of utilities, lack of transportation, and other basic necessities required for day to day living.
Based on my experiences, palliative care specialists seem better able to address physical, emotional, spiritual, and social suffering when they see patients as part of a team of multiple disciplines with a wide variety of expertise. Whether they are a one person practice or part of a big team, palliative care specialists try their best to relieve symptoms impacting quality of life.
5. The palliative care specialist realizes that basic social needs must be addressed before big picture conversations can take place.
A PCP expresses his frustrations about a patient who "will not show up to her gynecologist!" The word "non compliant" is sprinkled throughout the patient's chart.
When I speak to the patient, she acknowledges that she needs to have her cervical cancer treated. "But I used the money I would have spent on bus fare towards paying for bread and baloney. I've already had the water cut off...I'm staying at a friend's while I work on getting the water turned back on."
"I'm stretching out this blood pressure medication to every other day so I can save on medications and have enough for groceries at the end of the month."'
Palliative care specialists are highly reliant on the help of their social workers to assist patients with meeting pressing daily needs. They know that an oncologist may think their patient is listening while they describe recommended treatment plans for a new diagnosis of colon cancer when likely the patient is distracted by pressing thoughts on how they will make the next truck payment if they have to stop working (read Post 50: What about the Hidden Costs? - 10 Potential Expenses of Living with Declining Health).
6. The palliative care specialist offers support to family as well as patients.
When a person lives with a chronic illness, their family lives with that illness too.
A man learns he has diabetes, and his daughter alters her grocery shopping habits, switching out Hawaiian bread for butter lettuce to eat with sloppy joes. A woman with advancing dementia starts requiring help to bathe, dress, and toilet, and her granddaughter defers college in order to stay home and provide caregiving. A man undergoing chemotherapy and experiencing cyclical periods of fatigue and decreased immune system stops hanging out with his "like a brother" best friend at the casino every Saturday night.
Many palliative care meetings, especially those in the hospital, include both patient and family. Just as a family lives with a person’s medical illness, so also their lives are affected by major medical decisions. Palliative care specialists address the concerns of caregivers, family, and close friends, as well as those of the patient.
A person can benefit from a palliative care consultation at the time they are diagnosed with a severe chronic illness, midway through their disease course, or when their disease progresses to an advanced stage. If a person is stable in their course, they may require only one palliative care visit. If a person’s medical disease or physical condition is changing, they may benefit from regular palliative care visits.
Palliative care specialists can help people with any type of medical disease at any stage, even those with a prognosis of decades. If a person's disease were to become very advanced or end stage and the person's priorities changed to comfort focus, palliative care specialists can discuss when to consider accepting hospice support at home (Read Post 2: Five Major Ways Palliative Care Differs from Hospice and Post 56: Debunking Common Myths about Hospice - Part 1 of 2).
A gastroenterologist once asked me, "Why do I even need you? I can talk about this on my own."
I responded, "That's wonderful! Your patients are fortunate to have a specialist who has the time, skill, and willingness to discuss all of these topics. Not every physician is comfortable, willing, or have the time. That's when I can be helpful (read Post 43: When a Palliative Care Consult Could Help - Nine Clinic/Home Visit Scenarios and Post 44: When a Palliative Care Consult Could Help - Eight Hospital Scenarios)."
* For specific case scenarios of how palliative care can change a life, read Post 71: How Palliative Care Can Change a Life - Sliding Doors Moment #1 and Post 75: How Palliative Care Can Change a Life - Sliding Doors Moment #2.