“We’re not ready for hospice…but what about palliative care? Can she get that?”
The man, probably in his late 60s, was the designated spokesperson for his five siblings, all of whom lived out of state. “We need clarity,” he began immediately after I introduced myself as the palliative care physician consultant (read Post 1: What Exactly Does a Palliative Care Specialist Do?), "Is it time for palliative care? Can we get that instead of hospice? What’s the difference? What would you recommend?”
His mom was a 90 year old woman who had “been living by herself until just three months ago!” Upon further questioning, I learned that living “by herself” actually meant that her children had tried their best to honor her desire to stay in her own home by taking turns staying with her.
They started doing this about five months ago after her first fall, when she progressively needed more help getting up from a chair, getting dressed, showering, and occasionally even using the toilet. She also began losing her appetite, eating half of what she would normally eat, and losing seven pounds during this time.
A month ago, she fell again but this time broke her right hip. She underwent hip repair surgery and was transferred to a skilled nursing facility (essentially, a short term stay in a nursing home-like environment, where frail patients can undergo physical therapy for an hour each day for several weeks, with the hope that they could then return to their previous living situation).
Unfortunately, she did not have much energy to work with the physical therapists, essentially remaining bedbound with perhaps one day of standing with significant help. She, also, had to return to the hospital for increased confusion and shortness of breath due to pneumonia. Despite IV (intravenous) antibiotics, she remained fatigued and more confused than her normal self.
“She’s not alert enough to eat or work with physical therapy,” the primary team explained when they consulted our palliative care team, “and we talked to her son, Adam, about placing a feeding tube to at least start some nutrition…but he said that was too invasive! So what does the family want - hospice? Can you talk to them and clarify their goals?”
This consultation question is what led the palliative care team to sit with son Adam. Adam said, “I was reading that palliative care offers all kinds of great support while focusing on quality of life as a patient continues medical treatments. I think that’s what we want! Can we get that for Mom? Instead of something so invasive as a feeding tube and something so extreme as hospice?”
This is where I as the palliative care physician paused and thought, “Another example of a la carte medicine. It doesn’t work.” It would be like a teacher asking a parent, “Do you want me to teach your child writing in print or writing in cursive?” when the fundamental goal is for the child to learn how to write an essay.
I explained to Adam, “My recommendations would depend on what your family’s overall goals are for your mom. We just spoke about how based upon the months of decline your mom has had in strength, appetite, memory, ability to do things like remember how to shampoo her hair, that likely your mom already had some form of dementia that was worsening, even prior to this fall.
Sometimes, when someone’s body has experienced so much trauma - such as a couple falls, hip fracture, surgery, staying in a new place such as rehab, pneumonia, another hospitalization! - dementia worsens even faster. There is a possibility that some of this is temporary delirium, and some alertness could potentially improve. But it is just as likely, given how she has not improved despite the doctors treating her for everything “fixable” that they could find, such as pneumonia and mild dehydration, that this could be her new baseline.
Knowing this, some families might say, ‘We want to see if nutrition will perk her up and work with physical therapy. We need to get her back to the skilled nursing facility, where she can get rehab, and at least try to see if she can stand again.’ If so, then the next steps for those families would be placing a long term feeding tube in the stomach and starting her on artificial nutrition to see if she would become stronger and alert enough to work with physical therapy.
On the other hand, some families might say, ‘Mom is tired. We already tried rehab, and it didn’t work. Mom only got worse and is now back in the hospital. If she has likely worsening dementia and her average time with us is months, we would rather prioritize her comfort and her sense of security in her own home. We wouldn't want a feeding tube and would instead prefer to focus on bites and sips for pleasure and comfort. We would want to bring her home ASAP and have the hospice team teach us how we can keep Mom comfortable both now and later when it's her time and she's dying.”
Adam contemplated this and eventually responded, “Well, it’s only been a month. I think my siblings and I would all want to know that we tried as much as we could. So yeah, if the only way we can get Mom back to the skilled nursing facility and not have her sent back to the hospital for not eating is with a feeding tube, then let’s place that feeding tube! We need to see if nutrition will make Mom stronger, strong enough to work with physical therapy. But we don’t want her to keep coming back to the hospital. What about palliative care? Can she still get that?”
This is where the realities of palliative care services in parts of America do not quite match up with the ideals of palliative care services that we read about on the Internet.
Big teaching hospitals usually have well-established palliative care clinics, dedicated to providing extra support for patients whose health is declining to the point that their day to day lives (their abilities to work, drive, dress themselves...and their relationships with friends, partners, and children) are being affected by severe physical decline or unexpected prognosis.
This “extra support” may be a palliative care physician dedicated to relieving severe pain with higher doses of opioids if need be and relieving other uncomfortable symptoms related to serious illness or treatment side effects, such as and not limited to severe nausea, hiccups, itching, dry mouth, and constipation. The “extra support” may be the palliative care physician taking the time to sit and really listen to patients and family members as they talk about how serious illness and worsening disease is impacting the entire family and how their goals may be evolving from “prolonging life” with repeated and prolonged ICU (intensive care unit) stays to maximizing “quality time” with family at home (read Post 89: The Evolution of Goals).
The “extra support” may be a palliative care social worker assisting in a variety of areas such as facilitating communicating difficult news with young children, finding transportation access to doctors’ appointments, or answering questions about burials and funeral homes. The “extra support” may be a palliative care chaplain who is given allotted time to meet with a patient or family member struggling to find meaning in a completely altered future.
All of this “extra support” take time, often by experts who are not considered to provide billable services (often social workers and essentially all chaplains). Many organizations (except entities such as certain large teaching hospitals, cancer centers, or Medicare Advantage plans) are financially unable to or unwilling to provide these services.
Physicians can bill for seeing patients, however more time spent in each patient/family meeting (read Post 3: The Secret Sauce in Palliative Care…) means fewer number of patients who can be seen and billed for. Individual physician clinics, smaller hospitals, and other healthcare entities may be financially unable or unwilling to provide palliative care due to the “unproductive” nature of their services.
Currently, more and more hospice and home health agencies are attempting to establish a palliative care arm, offering palliative care visits to the home. At least in the city in which I practice, vastly different home services are offered in the name of “palliative care.” The following are examples:
- A nurse who has not been sufficiently trained in leading families through difficult decision making and goals of care discussions may primarily spend twenty minutes reviewing medications and checking vital signs and call that a “palliative care visit.”
- A nurse who has been sufficiently trained in leading patients and families through difficult, “big picture” discussions may check in on the patient once monthly. Sometimes, a social worker and/or chaplain will be “borrowed” from the hospice side to also check in on the patient and family if requested.
- A nurse who is able to guide difficult decision making assists with communicating difficult topics, however all physical symptoms, such as severe pain requiring opioids, is referred back to the primary care physician, who themselves may not be willing nor comfortable prescribing opioids. Rarely, the overseeing physician for the palliative care service may be willing to prescribe opioids on a case by case basis for a palliative care/non-hospice patient.
- A nurse whose primary goal is to reduce hospitalizations will work with the supervising physician to offer services ranging from labs and x-rays in the home to conversations on when to transition to hospice support. This is most effective in helping to keep a patient out of the hospital when they are in an earlier stage of their disease or illness. At some point, when a patient has late stage or end stage disease or illness, the fragile patient often needs hospital level of care more and more often to stabilize from acute worsening episodes.
- A physician makes home palliative care visits, but only to truly homebound patients, not to those who are still physically able to go to their clinic visits (for treatment of their cancer/ congestive heart failure/ multiple sclerosis/ kidney failure/ other severe disease), so for example, patients with advanced ALS (amyotrophic lateral sclerosis, or Lou Gehrig’s disease).
- A hospice agency calls their palliative care department “the care you get when you have months to live, but you have to be willing to let go of hospital and clinic level of medical care” and their hospice department “the care you get when you have days to weeks to live,” both of which are fundamentally incorrect definitions (read Post 2: Five Major Ways Palliative Care Differs from Hospice).
Keeping the above in mind, I told Adam, “Based on your mom’s insurance, she would be eligible for home palliative care visits. At this stage in your mom’s health, I don’t think palliative care would make a big difference in your mom’s ability to get stronger, eat more, become more alert, or stay out of the hospital, especially if she has underlying advanced dementia that is worsening.
A palliative care nurse checking in with your mom once a month after your mom returns home from rehab – and I would think she would only be able to return home if you and your siblings continue with day and night care for your mom – is likely not going to change the trajectory of her health. She will likely continue to be at high risk of recurrent hospitalizations due to complications related to her frailty and bedbound state.
I think with regards to the palliative care services that are available right now and how frail your mom is, at most, the family might benefit from having future follow up family meetings like this with an experienced or trained palliative care nurse.
I think if and when you and your siblings were to decide that your mom is not responding to physical therapy nor artificial nutrition and/or is coming back to the hospital again and again without overall improvement, then that might be the time to let go of hospital level of care. That may be the time to instead focus on comfort and quality of life at home, with the help of the hospice team (read Post 56: Debunking Common Myths about Hospice – Part 1 of 2 and Post 57: Debunking Common Myths about Hospice – Part 2 of 2).”
Adam replied, “Palliative care sounds magical when you read about it, but I guess it can’t do magic. Well, I know now we want the feeding tube for mom, to at least see if the nutrition will get her stronger. I know my siblings and I are not ready to give up on attempting rehab again. But at least I know that if this doesn’t work out, we have options. I think having a palliative care specialist checking on us to guide us through another conversation like this would be helpful, so we’ll ask for a home palliative care referral once she gets out of rehab. Thank you for this meeting. It’s really given me the clarity I - and my family - have needed. ”
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