A patient’s journey towards hospice often begins with a goals-of-care conversation, but those discussions must be timely and effective to truly guide the services a person receives at the end of life.
Hospice News spoke with Dr. Kurt Merkelz, M.D., FAAHPM, chief medical officer for Compassus, about the value of these conversations, when they should happen and how clinicians should conduct them.
Compassus, one of the nation’s largest hospice providers, is a portfolio company of the private equity firm Towerbrook Capital Partners and the health system Ascension Health.
This interview was edited for clarity and length.
What is the value of goals-of-care conversations?
There’s no question of the value for a patient who’s imminently dying to document goals of care. There’s plenty of studies that show that what patients want and the care they receive in those final days aren’t congruent.
The problem there is: It’s hard to deliver on what we can call the hospice promise, having symptoms fully managed, your goals of care fully discussed, that are aligned with the care that you’re receiving, focusing on comfort, medication reduction, maximal comfort, symptom management, support to the family, quality of life. That’s a lot, and that’s really hard to deliver in a couple of days.
I wouldn’t say that hospice isn’t able to rapidly do crisis management and get symptoms moderately and maybe fully controlled in those final days, but it’s a chaotic time period. Is that what we’re really talking about? I don’t think that is, and I think that’s where most people are left in those final days.
What challenges exist in asking patients to choose between comfort and curative care?
There’s that middle area of care that we’re trying to discuss. So that conversation, what is it that we’re offering at that point? What are we communicating with the patients and family?
So this is where I struggle with what I would say. Who’s having this conversation? Is it the specialist? Is it primary care? Is it the family doctor? Is it the palliative care professional? Is it the physician? Is it the nurse practitioner? Is it the care liaison? And what are they actually offering?
Because I hear a lot of this, it’s either comfort care or it’s let’s restore function. That’s what hospice offers: comfort care, or there’s an aggressive restore-functional care. Again, it’s not realistic to what the patient is experiencing.
The patient is the common patient, elderly polychronic disease state. They’re not likely able to return to any function after multiple hospitalizations, declining health. Regardless of their condition, it’s not going to be curative.
This curative versus non-curative care, that one really gets to me because that’s not what we’re really offering. None of these chronic diseases of hypertension, congestive heart failure, cerebrovascular disease, the diabetic neuropathies, chronic obstructive pulmonary disease, interstitial lung disease, chronic liver disease, ESRD, Alzheimer’s, all the other dementing, none of them are cured. None of them are cured.
We’re not really discussing curative versus comfort. Yet the clinician, that’s how they come to that table.
When we come to that table to talk to families, how do we broach hospice? When do we broach hospice? What it really gets to is miscommunication, a misunderstanding of goal concordant care, and us only offering a choice between comfort or curative, and those really aren’t the options. There’s a whole bunch in between.
I see this written up all the time, patient-defined goals. Really, that’s a lot to ask of a 78-year-old diabetic hypertensive, COPD, CHF, or osteoarthritic, osteoporotic, GERD. The goal is to not have any disease and to be healthy again. Okay, that’s not realistic. I think we’re overemphasizing a need for a response that the typical patient can’t provide.
Do most clinicians outside of hospice and palliative care have the knowledge and training to conduct these conversations?
There’s the question to the physician. What are we actually offering in this goal-concordant care? They’re all trained in the hospital setting, hyper-focused on aggressive interventions to try to reverse or restore the medical condition.
There is very little training in understanding goal-concordant care and how to drive care towards function and the actual needs of the aging, debilitated patient. Geriatricians have it. Some palliative care physicians have it. But beyond that, there’s a lack of understanding among all the disciplines.
How do late goals-of-care conversations affect outcomes?
The condition has to be managed. Care and their living environment have to be safe. They want to stay at home or wherever their living place is, and not be rehospitalized, and they want quality of life.
If everyone could align on what the what the outcomes are in goal-concordant care and deliver care to that effect, I think now we can have a discussion of what should take place. It becomes, not about a hospice discussion, but it becomes the needs-of-the-patient discussion. Then you match up the needs appropriately, and you provide services that optimize this condition.
With late conversations, we often can’t even deliver the full hospice benefit, and the patient care experience and outcomes aren’t optimal. You get negative results when the patient’s only on three days because it’s too much crisis management.
When should goals-of-care conversations take place?
So at less than a week of life, less than two weeks of life, that is not optimal. We need to have it before then. When the patient is going to live longer than a year? Not likely.
We know prognostication is complex. Ideally, having that hospice, having that goal-concordant-care discussion at some point during their chronic disease trajectory that discusses the needs of the patient, and if those needs happen to align with what hospice services cover, then hospice would be the right approach to go.
Why do hospice conversations happen too late?
Physicians often delay hospice conversations for understandable reasons. They may worry about taking away a patient’s hope, portraying an illness as more advanced than it is or making recommendations amid the inherent uncertainty of prognostication. However, another significant barrier is the way care choices are traditionally framed: as either curative or non-curative.
Patients may interpret this distinction as a choice between continuing to receive care and giving up. No one wants to feel as though they are giving up care, and this framing does not accurately reflect where many patients are in their disease journey. It creates a false choice between restoring function through traditional clinical or rehabilitation models and maximizing comfort through hospice. As a result, referral sources may consider hospice only when a patient is actively dying—often too late for the patient and family to experience its full benefits.
There is a significant gap between these two models of care. Many patients who could benefit from a hospice conversation are living with chronic illness, progressive functional decline, increasing caregiver burden and unmet safety or support needs. Their care choices should not be defined solely by whether treatment is curative. Instead, care should be guided by what matters most to the patient—an approach known as goal-concordant care.
Clinicians should be trained to frame hospice as supportive care and to help patients transition from disease-centered care to care aligned with their individual goals and priorities. When disease-centered treatment no longer adequately addresses a patient’s functional decline, debility, safety concerns, caregiver burden or changing priorities, clinicians should begin a thoughtful conversation about the patient’s goals and the support hospice can provide.
In addition to honoring each patient’s stated wishes, goal-concordant care should focus on:
- Providing supportive management of the patient’s medical condition
- Mitigating safety risks
- Preserving autonomy
- Supporting the patient’s desire to age in place
- Reducing caregiver stress and burden
- Enhancing quality of life
These are the outcomes hospice providers should strive to deliver. Framing hospice conversations around these goals allows discussions to occur earlier in a patient’s decline, giving patients and families the opportunity to benefit from hospice care for much longer than the final days or week of life.
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