Post 43: When a Palliative Care Consult Could Help - Nine Clinic/Home Visit Scenarios
Updated: Sep 22, 2021
The palliative care medical subspecialty is relatively young. The World Health Organization officially recognized palliative care as a specialty in 1990, and palliative care officially became a board certifiable medical subspecialty in the United States in 2006.
Sometimes it may not occur to healthcare providers that a palliative care consultation could be useful (read Post 1: What Exactly Does a Palliative Care Specialist Do?) because they may not be familiar with the medical specialty. It may fall on patients or family members to request to see a palliative care specialist.
I want to provide example situations in which meeting with a palliative care specialist could be helpful. The following are situations when a palliative care consultation, even a one-time visit, could be helpful in the outpatient setting. Outpatient means a person is seen outside the hospital, such as in a clinic or in their own home.
1. When a person is first diagnosed with a serious disease
Serious disease can include Alzheimer's or any other dementia, Parkinson's disease, multiple sclerosis, rheumatoid arthritis, advanced heart/lung/kidney/liver failure, cancer and any other disease whose symptoms could significantly impact a person's life.
"A palliative care consultation at this time may end up being a single comprehensive visit or include a series of follow up visits. We would explore personal values and goals of care (read Post 7: I Want the Best Care Possible for ME - Part 1 of 2), potentially difficult questions that might come up in the future and future scenarios to prepare for, advance directives [read Post 4: Eleven Common Myths about the Medical Power of Attorney (MPOA)], suggestions for coping, the extent of family and friends support, suggestions on how you could talk to young children about your diagnosis (read Post 29: How Do I Talk to My Kids About My Illness? - Seven Pieces of Advice), potential 'real life' difficulties such as not being able to pay utility bills or having a means of transportation to treatments, and uncomfortable symptoms that is affecting quality of life. We would try our best to support the physical, social, emotional - and sometimes also spiritual - aspects of your life that have been impacted by this diagnosis."
2. When a person does not want certain medical treatment for their serious disease
Sometimes a person knows from the time of diagnosis that they do not want certain medical treatments for their serious disease. "It's too aggressive. It's too much. If it can't be cured, I just want to focus on peace and calm and living my life until it's my time."
This may be the older gentleman with newly diagnosed advanced stage kidney cancer who declines cancer therapy because he wants to feel well enough to continue hanging out with his friends every morning at McDonald's "until I can't." This may be the 80-year-old woman who says, "I don't want to be hooked up to machines every other day. I don't want dialysis. If my kidneys fail, make me comfortable and let me go."
Sometimes a person attempts many treatments and experiences many hospitalizations before they decide they do not want to pursue any more treatments for their disease. This may be the 68 year old woman with end-stage liver failure who returns home after her fifth hospitalization and says, "I don't want to go back. I don't want to hang on for a liver transplant that I would be too weak and tired to survive. I'm not scared of dying. I just want to stay home."
"A palliative care consultation would not only include a discussion on what is most important to the person and their personal values, advance directives (read Post 5: CPR on TV versus CPR in Real Life - Three Ways They Differ), prognosis and potential scenarios to expect in the future, how they and their family are coping, family and friends support, and any uncomfortable symptoms to treat, but also an introduction to hospice support at home (read Post 2: Five Major Ways Palliative Care Differs from Hospice). We would talk about when hospice support at home would make sense, especially if comfort treatments at home - rather than going to the hospital - for emergency symptoms were in line with the person's care goals (read Post 25: When to Consider Hospice Support - Example #2)."
3. When a person is suffering treatment side effects, disease symptoms, or psychiatric symptoms affecting their quality of life
Palliative care consultants can help manage severe symptoms, such as severe shortness of breath from advanced congestive heart failure; severe pain from cancer spreading to other organs; severe constipation from opioid pain medications; or severe anxiety related to shortness of breath from chronic obstructive pulmonary disease (COPD, a lung disease in which airway blockage occurs due to airway inflammation or mucous overproduction due to long term lung injury, such as from cigarette smoking).
"Half of palliative care is delivered through communication, whether it be for decision making support, emotional support, social support, or spiritual support. The other half is delivered through medications and medical treatments for physical and psychiatric symptoms. Sometimes symptoms such as intractable pain is due to a combination of physical pain and existential or spiritual suffering. That is when having a palliative care team with multiple disciplines - physicians, nurse practitioners, physician assistants, nurses, pharmacists, social workers, chaplains, counselors, and art and music therapists - working together can be most effective."
4. When a person is getting weaker or more fatigued and doing less day to day
Many people start redefining "quality of life" when their disease or illness changes their body and their ability to do things. A former athlete now with difficulty moving his left leg after a stroke may say, "I used to play ball. I would never have imagined spending my days sitting and watching TV, but this is what I do now. I watch sports on TV. At least I have my family, and we can watch games together on the weekends."
Sometimes a person does not have a single event illness, like a stroke, that impacts their ability to move. Sometimes a person has a persistently progressing illness, advancing disease, or declining health that causes progressively worsening strength, balance, stamina, or energy. A 72 year old woman with Parkinson's disease may have been able to water the plants in her garden last year, but this year she requires help to push down and pull up her pants when using the bathroom and help with cutting her food into small pieces.
"Palliative care specialists would ask about your goals of care and what at a minimum would be necessary for you to maintain an acceptable quality of life to help guide you and your family members with future decision making. We would discuss expected disease trajectories, including decreased appetite and weight loss, decreased swallowing strength, and increased sleepiness and fatigue, to prepare you and your family members the best way we can (read Post 24: A Cloudy Crystal Ball - Predictors of Prognosis Part 1 of 3 and Post 28: A Cloudy Crystal Ball - Predictors of Prognosis Part 3 of 3 ). We would help you complete advance directives and discuss at what point one may consider hospice support at home. Just as important would be our supporting your caregivers and addressing coping mechanisms (read Post 42: Thirteen Suggestions for Coping with Caregiving and Decreasing Risk of Burnout), caregiver burden, and potentially even caregiver burnout (read Post 41: Is This Caregiver Burnout? - Twenty Signs of Potential Burnout)."
5. When a person's appetite and weight are decreasing due to worsening disease
If a person loses weight despite workup and treatment for treatable causes such as thyroid disorder or depression, decreasing appetite and weight can be manifestations of worsening illness, health, or disease. The woman with severe COPD who has lost 15 pounds in the past year has a more worrisome prognosis than the same woman with the same disease whose weight remains stable (read Post 26: A Cloudy Crystal Ball - Predictors of Prognosis Part 2 of 3).
"Palliative care specialists would ask about your goals of care. We may ask when you would consider 'enough is enough,' for example clarifying misconceptions about feeding tube placement and other 'life prolonging' measures that may not actually be life prolonging. We may talk about prognosis, advance directives, coping for your caregivers, and when to consider focusing on comfort and hospice support at home."
6. When a person's disease is worsening despite treatments
Sometimes a person's will to pursue disease treatments is strong in a body that is physically not responding to disease treatments.
"I've tried four different cancer therapies in two years. The oncologist told me there isn't any other cancer treatment they can try, not even a clinical trial, for me."
"The oncologist says technically we can continue with the cancer therapy, but he's worried that I'll do worse because my body hasn't been able to tolerate it. He's worried I might need to be hospitalized again."
"A palliative care consultation at this time would include reframing goals of care to achievable goals at this point in your life (read Post 8: I Want the Best Care Possible for ME - Post 2 of 2), taking into account your prognosis if you are ready to talk about it. It would include a discussion about how you are coping, how your family is coping, advance directives, and perhaps legacy projects (read Post 12: Legacy Work and the Five Senses). To be honest, legacy work could be started at any point in a person's illness, even at any point in a person's life even if they're not sick. We would talk about relieving uncomfortable symptoms as well as at what point one might consider meeting with different hospice agencies to find the right fit for them."
7. When a person's social support, such as family or close friends, are asking for help or indicating feeling overwhelmed
When a person is trying to understand and adapt to living with a serious illness or declining health and strength, their family is going through the process as well. When a person receives a serious diagnosis, in a way the family receives it as well.
Sometimes family members become caregivers, and sometimes their lives may revolve around the caregiving. Sometimes the caregiver tries their best to juggle multiple responsibilities, and it becomes overwhelming for one person to manage.
A 76 year old man with dementia who repeatedly tries to get out of his bed to wander around the house on his own, falling each time, may have an overwhelmed son trying to stay at his father's side day and night – sleeping in a cot by his father's bed, paying a neighbor out of pocket to watch his dad during his work shifts, coming immediately home to take over supervision, and leaving his father unattended in the house no more than one hour at a time while rushing out to get urgent groceries.
Sometimes part of the coping difficulty is because of struggles with obtaining basic day to day necessities, such as the financial ability to obtain groceries or medications or difficulty with finding a ride to doctors' offices.
"A palliative care consultation would be both for you - the caregiver - and your loved one - the patient. Part of the consultation would include discussions about goals of care, advance directives, and any concerning symptoms your loved one is displaying. Another part of the consultation would be about coping for you - the caregiver - and potential resources that could help you get respite. Sometimes it's the day to day living difficulties, such as stress over finances or finding transportation, that contribute to coping difficulties. The palliative care social worker would work with you to find the best solutions possible. We would also discuss 'what if's', for example where the best place for your loved one may be if your loved one required even more one on one care, keeping in mind your loved one's finances, insurance coverage, and what you want most for your loved one (read Post 36: Should I Place Dad in a Nursing Home? - Six Practical Steps to Making a Difficult Decision). This is also when meeting with the palliative care social worker could be helpful."
8. When a person (or their family member) seems to be in denial and unable to engage in a conversation about 'what if's'
Denial is a valid means of coping (read Post 13: Sometimes It's Denial, and Sometimes It's Just Really Bad Timing). Prolonged denial can become more harmful than helpful.
Denial about symptoms may prevent a person from seeking a diagnosis. Denial about a diagnosis may prevent a person from learning about treatment options. Denial about a person's physical weakness, weight loss, health decline, and prognosis may prevent a person from planning ahead and moving forward, such as maximizing time with family, getting affairs in order and completing advance directives, working on a legacy project, and giving time for loved ones to say goodbye (read Post 18: Decisions Based on Love Can Be the Hardest to Support).
Sometimes denial results in a person losing the opportunity to say goodbye to their loved ones.
"A palliative care meeting including the social worker and/or chaplain could be helpful in this situation. Palliative care specialists would meet you and your family where you are - emotionally, mentally, and spiritually - and perhaps focus initially on physical symptoms or advance directives. They may then later explore as much as you and your family are ready to explore on follow up visits (read Post 33: Seven Ways to Approach a Person in Denial)."
9. When a person could potentially benefit from hospice support, but family or healthcare providers experience difficulty bringing it up
Sometimes family members hear from friends or other family members, "What about hospice?" to which they respond, "I don't know. What about hospice? How do I know if it's time?" Family members may either keep this question to themselves, assuming their loved one's primary care physician or specialist will bring up hospice support first, or they may ask about hospice support to their loved one's healthcare provider who then provide a vague response.
"I asked her cardiologist what he thought about hospice support since she can barely leave the house and doesn't want to leave the house, and he said he didn't think that was necessary. He said he would have us speak with palliative care instead."
"In addition to goals of care, advance directives, family and friends support, and uncomfortable symptoms to address, the palliative care specialist would discuss potential illness trajectories and prognostic ranges. This often involves getting the specialists' input on their thoughts on prognosis, which itself may be dependent on how your body is responding or not responding to medical treatments. Palliative care specialists can describe when and how hospice support could help family members care for their loved ones at home without having to rely on 911 for sudden symptoms (read Post 23: When to Consider Hospice Support - Example #1 and Post 27: When to Consider Hospice Support - Example #3)."
If in doubt, err on the side of requesting a palliative care referral. A personal values and goals of care conversation; advance directives discussion; overview of caregiver, family, and friends support; review of daily and self care activities; and evaluation of symptoms impacting quality of life usually provide benefit for any person – and their family – at any point in a disease process.
In Post 44: When a Palliative Care Consult Could Help - Eight Hospital Scenarios, I describe how a palliative care consult could be helpful for patients in the hospital setting.