Palliative care is a young medical specialty, born from the realization that people dealing with serious illness, and their family members, sometimes need support and guidance beyond medical advice. Sometimes they need additional communication support, physical symptoms support, caregiving and day to day living support, and/or spiritual distress support (read Post 1 - What Exactly Does a Palliative Care Specialist Do?).
Palliative care was recognized as a medical specialty by the World Health Organization in 1990. It officially became a board certifiable medical subspecialty in the United States in 2006. Because the specialty is relatively new, many people both in and outside of healthcare are unsure of how to best utilize palliative care services.
In Post 43: When a Palliative Care Consult Could Help - Nine Clinic/Home Visit Scenarios, I describe specific examples of how a palliative care consultation could help a person living with serious illness, advanced disease, or worsening health in settings outside the hospital ("outpatient").
In this post, I provide specific examples of how a palliative care consultation could help a patient and their family when the patient is in the hospital ("inpatient"). A palliative care consultation could help a patient in the hospital for any of the reasons already listed in Post 43. The following are additional reasons specific to the hospital setting, including potential reasons for which a patient or family members could request a palliative care consultation themselves (note, palliative care consultants are unfortunately not available in every hospital).
1. When a patient is suffering difficult to control symptoms
One of the reasons people go to the emergency room (ER) is for relief of severe or unrelenting symptoms. Sometimes they are admitted into the hospital when they are not able to get symptom relief in the ER. Symptoms may persist even when the medical teams control the underlying disease as best they can. Examples may include severe shortness of breath from advanced congestive heart failure, severe nausea from advanced kidney failure, or severe pain from cancer spread to bone.
Sometimes intractable symptoms such as pain and anxiety are in part due to emotional, existential, or spiritual distress, in which case medications alone are often not adequate.
"Palliative care consultants specialize in symptom relief for people living with serious illness or disease. Sometimes we are consulted to relieve symptoms so that people can return home to remain at home in greater comfort. Other times we are consulted to relieve symptoms so that people can leave the hospital and resume medical treatments in clinic, such as chemotherapy.
Sometimes people express spiritual distress that seem to contribute to their physical symptoms and/or inhibit their ability to move forward with decision making. This is when having a multi-disciplinary palliative care team, including at least a chaplain and social worker, could be very helpful."
2. When a patient has repeated hospitalizations for the same chronic disease
One manifestation of worsening disease is a person going to the clinic or to the ER repeatedly for recurrent symptoms related to their disease.
"I take my water pills the way I'm supposed to, but my legs still get swollen after a few weeks. I try to stay home for as long as possible but I have to come in when my legs get so heavy and painful I can't stand it. My cardiologist says my congestive heart failure is severe."
"This is my fourth hospitalization this winter for COPD flare (chronic obstructive pulmonary disease, a lung disease in which airway blockage occurs due to inflammation and mucous overproduction, ultimately caused by long term damage to the lungs such as from cigarette smoking). I don't want to come back to the hospital, but I'm not going to just sit there at home when I feel like I'm suffocating."
"A palliative care consultation would include discussions on your values and goals of care and your expectations for your future (read Post 8: I Want the Best Care Possible for ME - Part 2 of 2). We would ask what you understand about your disease and clarify any misconceptions. We would complete advance directives [read Post 4: Eleven Common Myths About the Medical Power of Attorney (MPOA)]. We would also discuss when someone might consider transitioning to hospice support at home, especially if their goal were to receive medical help for comfort at home rather than in the hospital (read Post 27: When to Consider Hospice Support - Example #3)."
3. When a patient is recommended major surgery
Any person being evaluated for heart surgery, brain surgery, organ transplant, or any other major surgery could benefit from a discussion on goals of care, quality of life, and advance directives.
Whenever surgery is recommended, the expectation is that the potential benefit of the surgery outweighs potential risks. Because there are risks, sometimes complications due occur. A person undergoing heart surgery may end up having a stroke. A person undergoing abdominal surgery may end up having a perpetually open surgical incision site wound from infection.
Sometimes a person is able to make decisions for themself after surgery, and sometimes they are not, for example in the case of a stroke complication. This is when it is helpful to have already named a medical power of attorney and to have already discussed personal definitions of quality of life with the medical power of attorney, prior to surgery. The medical power of attorney would use this conversation as guidance for how they could make medical decisions for someone if that someone could not make decisions for themself after an unexpected surgery outcome.
"A palliative care consultation prior to major surgery could be a one time consultation, primarily to discuss your and family's hopes for the surgery and your goals for life after the surgery. We would make sure everyone is on the same page with regards to the medical situation and surgical expectations. We would help complete a medical power of attorney, and discuss what resuscitation meant for your future reference (read Post 5: CPR on TV versus CPR in Real Life - Three Ways They Differ)."
4. When a patient is transferred to the intensive care unit (ICU)
When someone is so critically ill that they have to be closely monitored every minute in the ICU, that would be an ideal time to discuss expectations for recovery in the ICU. This critically ill person may be the person who is transferred to the ICU for dangerously low blood pressures due to overwhelming infection in the body. This may be the person whose lungs are unable to function on their own because of a severe and complicated pneumonia. This may be the person who is unconscious from a large hemorrhagic (bleeding) stroke in the brain.
"Usually by this time, the patient is unconscious, sedated, or confused. The palliative care team would likely meet with your family, though if you as the patient were alert, we would certainly include you. We would make sure we obtained the most up to date information, as well as professional opinions on prognosis, from all involved specialists prior to meeting with your family. We would find out what your family knows and what your family expects and go from there, trying to get your family's expectations and the ICU team's expectations on the same page.
If the ICU team were very worried about prognosis and the possibility of someone dying in the ICU, we would also share this with the family and discuss time limited trials, for example attempting life support medications, ventilator, or dialysis for a certain period of time and to continue if there is improvement and to discuss again what to do if there were no improvement. We would talk about what resuscitation would look like and ask what your and/or family's wishes would be in the context of the current medical situation."
5. When a patient and/or their family disagree among themselves on which medical treatment path to take (or not to take)
If a patient is alert and medically sound, they can make their own healthcare decisions (read Post 10: Four Simple Questions to Determine if a Person is of Sound Mind), regardless of their family's wishes. Sometimes patients make decisions for medical treatments they ordinarily may not make for themselves in order to honor their family's wishes (read Post 18: Decisions Based on Love Can Be the Hardest to Support). "I'm so tired and I just want to go home and be with my family until it's my time. But I'm going to accept the chemotherapy and keep going because that's what my family needs right now."
This dichotomy can be distressing for healthcare providers who see themselves as serving the patient as opposed to the patient and the family as a whole. "I'm trying to advocate for my patient, who doesn't want this! But I think she's being forced into this by her family. Palliative care team, can you help?"
In other instances, the patient may not be alert and aware, and it is the family who are not in agreement among themselves. Half of the family may argue for a tracheostomy (a surgery to create an opening in the neck through which a tube is placed so air can pass directly into the windpipe) to continue ventilator support ("life support machine"), while the other half may argue for "freeing" their loved one from machines and allowing their loved one to die with family at the bedside.
"Palliative care specialists would meet with your family. Sometimes we come up with a plan after one big meeting, and sometimes this requires a series of meetings. We would make sure that all family members who wanted to be involved had a seat at the table, so to speak. If you could not be part of the meeting, the focus throughout the meeting would be on the kind of person you are, what your values are, and any statements you may have made to indicate what would be an acceptable versus unacceptable quality of life for you (read Post 32: When the Living Will is Not Helpful). We would make sure everyone understood the reality of your medical situation. Sometimes differences in what people are asking for is due to misunderstanding of a patient's medical situation or prognosis.
In the case of the patient wanting something different from what the family wants, palliative care specialists may guide the family conversation with 'what if' questions. Honestly, though, this is a conversation that has to happen among people who love each other. When someone decides to let go of their dream job to move their family across the country for their spouse's dream job, that is an internal family decision rather than an outsider's decision. If someone decides to continue a medical treatment for the sake of the family rather than according to their own personal desires, the family should be aware that that is the decision their loved one is actively making for the sake of the family and decide as a family together if that is the direction they want to go."
6. When a patient and/or their family disagree with the medical teams on the medical recommendations
Sometimes family members and medical teams become frustrated with each other because neither understand the other's perspectives. An example may be when the family want to continue life prolonging measures for their loved one for an indefinite period, and the ICU team does not think this patient will ever stabilize to leave the ICU.
"A palliative care consultation may include involvement of the ethics team, if available, and social worker and/or chaplain support. The initial consultation would likely focus on establishing a relationship since ongoing discussions would likely be required to discuss your and your family's hopes and fears in addition to the medical teams' thoughts on realistic prognosis."
7. When medical teams disagree among each other on what treatments to recommend to the patient or family
Sometimes patients and family members receive contradictory recommendations from multiple specialists. Family members not only become confused with regards to how their loved one is doing, they also become suspicious that their loved one is not receiving the best, most coordinated care possible.
Primary medical teams may also become frustrated by seemingly contradictory professional opinions and recommendations by multiple specialist teams. They may ask for a palliative care consultation to assist with communication among the patient, family, and healthcare teams.
"We have a gentleman with a clotting disorder who has severe pain in his limbs because of poor blood flow to his extremities. The left arm is the worst. The orthopedics team is recommending amputation of that arm for pain relief, and the vascular surgery team is recommending observing this patient with even higher doses of pain medication because an amputation would be life altering. We've already been titrating up his pain medications for a week. Can you speak with him and his family and get a sense of his goals...and help us with his pain control?"
"We have a woman with multi-organ failure in the ICU, and we spoke with the family this morning about how we're worried that she will likely not be able to leave the ICU. However, the nephrology team just offered dialysis for her failing kidneys, which the family accepted. Nephrology says they're buying time for other organs to recover, but we think they're prolonging the inevitable. Can you meet with the family to discuss their goals for this patient?"
"A palliative care consultation would involve first coordinating communication among all involved healthcare teams and obtaining each of their various perspectives and frank opinions on prognosis and expected outcomes. A cohesive perspective and set of recommendations from the multiple medical teams would be presented in a family meeting. If the multiple medical teams were not able to reach a consensus, then the palliative care team would frankly discuss the conflicting professional opinions and the reasonings behind these seemingly contradictory recommendations. We would guide decision making with the best data at hand, based on your and your family's hopes and definitions of an acceptable quality of life (read Post 16: Medical Decision Making 101)."
8. When there is no easily identifiable discharge destination for a patient with advanced disease who can no longer live on their own
Sometimes a person living alone finally comes to the hospital seeking help for a symptom that will not go away and unfortunately learns that they have a serious illness that had been causing the symptom. Examples of symptoms may include bloody urine or bloody stools; an increasingly large, bloody, or painful skin lesion; or frequent falls from worsening balance.
A person may not have readily identifiable family, friends, or caregiver support at home, nor would it be safe for them to return to living on their own due to inability to provide basic self care.
"A palliative care consultation, especially with involvement of the social worker, would likely include attempts at locating available family, friends, or acquaintances; discussing goals of care and personal values with you the patient (read Post 7: I Want the Best Care Possible for ME - Part 1 of 2); deciding who would be your surrogate decision maker; helping you complete advance directives; exploring realistic housing options; and discussing potential hospice support if you wanted to focus on remaining comfortable outside the hospital rather than pursuing treatments in clinics and hospitals (read Post 2: Five Major Ways Palliative Care Differs from Hospice and Post 25: When to Consider Hospice Support - Example #2)."
If in doubt, err on the side of requesting a palliative care referral. A personal values and goals of care conversation, clarification of the medical and health situation, realistic prognostic information, advance directives discussion, overview of social and spiritual support, and a review of symptoms usually provide benefit for any patient - and their family - living with an illness or health issue severe enough to warrant hospitalization.
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