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Wednesday, May 22, 2019

In Hospice, Time is an Illusion

by Lizzy Miles (@LizzyMiles_MSW)

Lately I’ve been thinking a lot about the perception of time and how it affects our patients. Because their time is limited, their perception of time and its value can often be magnified. This is our job, but this is the patient’s LIFE. We have to remember that for our patients, they may be hyper-focused on time. How do we help them feel good about timing and the time we spend with them? We can do this by being mindful of how we use our time with them and also how we show respect for their time.

Set expectations
There is research in the ambulatory care arena that says that patient satisfaction is increased if a patient knows how long they are going to have to wait to see the practitioner. It would be reasonable to conclude that this would apply to hospice visits as well.

Intervention: Always give a time range for when you’re going to visit so you bake time in for traffic, other longer visits, etc.

So much caregiver distress could be alleviated if we just set expectations appropriately.

• On admission, make sure you tell patients and families the visit frequency for each discipline.

• Inform family members how your organization’s paging system works. Encourage them to let us know when they call how important their call is. Encourage them to call back if they haven’t heard back from the staff member and they feel it’s urgent.

• If you’re taking a message for another staff member, don’t make promises for others. If you know there is a potential for delay in the other staff member calling them, let the patient know.

Coordinate with all team members to address patient/caregiver crises in a timely manner
Our perception of a reasonable response time for telephone calls or visit likely differs significantly from what a patient or caregiver feels they need. We may think two or three hours is a reasonable response time to visit when a caregiver calls about a new symptom that is causing panic. The caregiver may want us there ASAP. When we can’t get there quick enough, what happens? They call the squad. Emergency room visits for normal hospice symptoms are excessive, unnecessary and can be avoided with coordination.

Sometimes, the staff member who is initially requested may be caught up with something else, and another team member may have to temporarily assist.

Here are some options to consider as well:

Intervention: Can another staff member return the call to find out what is going on?

A social worker may be able to talk to the family member and learn that the caregiver simply wants to order equipment or supplies. Even if the need is for nursing, a call from a social worker to find out what’s going on can be helpful. The need may be for a question to be answered that social work can coordinate with the primary nurse or triage. If a nursing visit is needed, the social worker can inform the family the estimated time that the nurse will be coming out. Sometimes an estimate in itself all the reassurance the family needs.

Is it a matter of the caregiver just not knowing what medicine to administer and education can be provided on the phone by a triage nurse if primary nurse is unavailable?

There is nothing worse for families to not receive a call back when their question was a simple one that could be answered with instructions and education.

Is the social worker or chaplain available for a visit? Sometimes the family wants a ‘body’ from hospice and are comforted by the present of a social worker or chaplain.

Even with patients who are actively dying, I’ve found that as a social worker there is a lot we can do at the bedside to help the family. I’ve gone out to homes in advance of the nurse only to find that family just needed to know that the symptoms are normal and reassurances that they are doing everything right. There have been times where the family has said after my social work visit that they don’t need a nurse visit anymore. To be clear, I’m not in any way doing nursing work when I’m there. What I can do is assess if patient looks comfortable and there are no signs of distress or discomfort. Sometimes just hearing an outside person’s reassurances is all a caregiver needs in that moment.

Is there another nurse on the team who has a lighter load who can visit?

A good hospice organization will have a culture where staff members help each other out.

Intervention: Lead by example with your team members and provide support if another team member is “in the weeds.”

When what you give is never enough

I have to acknowledge there are patients and caregivers who do seem “needy” with time and sometimes their needs are beyond the scope of the work that we do. Patients with COPD in particular can be highly anxious and can have emotional needs. For these patients, we do need to also set time boundaries.

Intervention: Set expectations by telling a patient at the beginning of the visit how much time you have.

There are visits where you do have a limited amount of time due to another scheduled appointment. It’s best to acknowledge this for the patient or caregiver up front so that they don’t perceive that you are bored or impatient with the visit if you frequently look at your watch or the clock.

It may be helpful to know that there is patient satisfaction research that indicates that patients perceive that a provider spent more time with them if they sat down. Do you use a chair or stool in your visits?

If needs are emotional, be sure to be engaging the entire team in coordinating visits so they are spread out across the days. Utilize your volunteers to provide extra support to emotional patients and remember that telephone calls can be an intervention as well.

Show that we value the patient’s limited time

“If I’m here and you’re here, doesn’t that make it our time?” – Jeff Spicoli

Patients who are on hospice have limited energy. Caregivers can be overwhelmed and exhausted. If they’re not up for a visit, we shouldn’t force it because we need to check a box that we did our visit. There are nuances between someone declining a visit because they don’t want to bother you and declining a visit because they don’t need or want it.


• Psychosocial support staff should always ask for permission to visit with patient, whether they are in a facility or in a home.

• Always ask for permission to visit with caregiver. If a caregiver says it’s not a good time because they have a hair appointment, celebrate that they are doing self-care.
Also, patients or caregivers may want a visit to end before they tell you. Always assess nonverbal behavior to see if they’re talking because they want to or if they are just being polite.

Sometimes patients or caregivers say no to a visit because we are vague with the request. They may be more open to us visiting if we clarify how much time we plan to spend and the purpose for our visit. The more information they have with the inquiry, the more likely they are open to meeting with us.

Here are some of my favorite quotes on time:

Better three hours too soon, than one minute too late.
William Shakespeare

A man who dares to waste one hour of life has not discovered the value of life.
Charles Darwin

All that really belongs to us is time; even he who has nothing else has that.
Baltasar Gracian

The bad news is time flies. The good news is you’re the pilot.
Michael Altshuler

If not now, when?

Lizzy Miles, MA, MSW, LSW is a hospice social worker in Columbus, Ohio and regular contributor to Lizzy authored a book of happy hospice stories: Somewhere In Between: The Hokey Pokey, Chocolate Cake and the Shared Death Experience. Lizzy is best known for bringing the Death Cafe concept to the United States. You can find her on Twitter @LizzyMiles_MSW.

Photo credits: 
Cover image uses photo from Jon Tyson via Unsplash
watch via Wil Stewart on Unsplash

Wednesday, May 22, 2019 by Lizzy Miles ·

Saturday, May 4, 2019

Comfort Care, Whatever Does That Mean?

by Michael Pottash (@mpottash)

Comfort Care, whatever does that mean? This is the important question asked by my colleagues Anne Kelemen and Hunter Groninger in the September 2018 issue of JAMA Internal Medicine. The term is ubiquitous and its interpretation influences how patients with end stage illness are cared for at the end of their lives. In their article they argue that the language of Comfort Care is confusing and easily misunderstood. They suggest improving the understanding around end of life care and moving to a less ambiguous term for care of the dying. I worry that any term to describe dying care will always be problematic.

So what is Comfort Care? One common definition comes from Blinderman and Billings, writing in the New England Journal of Medicine, defining it as “the most basic palliative care interventions that provide immediate relief of symptoms in a patient who is very close to death.” Another is from the National Institute on Aging, describing Comfort Care as “care that helps or soothes a person who is dying ... to prevent or relieve suffering as much as possible and to improve quality of life while respecting the dying person’s wishes.” Both definitions are simple enough, and yet lack any specifics or direction for clinicians. This leaves the practice of Comfort Care up for interpretation.

Kelemen points out the pitfalls in operationalizing this vague term. First, it promotes a dangerous misconception that clinical care is binary and that patients must choose between focusing on comfort or not. Second, Kelemen cites a study demonstrating that while the term is ubiquitous, clinicians don’t actually know what it means. This leads to ambiguity around what kinds of medical interventions constitute Comfort Care and to a wide disparity in which medical interventions clinicians apply under the circumstance. Worse, some seem to think that it means methodically titrating up an opioid infusion: “Nearly half [of surveyed physicians] expressed a belief that Comfort Measures Only care is itself an indication for more aggressive opioid administration than for other patients, regardless of clinical condition. This is of concern because it seems to obviate the critical need for nuanced assessment that drives symptom management.” Administration of inappropriately high dose opioids will hasten death; this is at best bad medicine and at worst euthanasia.

Blinderman agrees:

“However, the term is often used in a misleading or imprecise manner — for example, when such care is automatically considered equivalent to a do-not-resuscitate order and, perhaps even without discussion with the patient, is extrapolated to mean the exclusion of a full range of palliative measures appropriate for a dying patient. Rather than simply writing orders for “comfort care” (or “intensive comfort measures,” the term that we prefer), the medical team should review the entire plan of care and enter explicit orders to promote comfort and prevent unnecessary interventions.”

A Pallimed post by Drew Rosielle from 2016 made a similar protest:

“One, it amplifies the already irksome and unnecessary dichotomy we have set up in medicine between 'cure' and 'comfort’... What we are trying to do in palliative care is to reduce the gap between the two, to help our patients feel better as they live longer… Two, it's confusing for patients and should never be said in front of them. I've seen it lead to stupid miscommunication many times. Like someone asking a patient 'Do you want comfort care?' 'Do you want us to focus on keeping you comfortable?' and the patient saying 'Yes of course' not realizing that the clinician was actually saying 'Should we stop efforts to prolong your life and *only* provide ongoing interventions to alleviate symptoms/provide comfort?'”

To summarize: Comfort Care is confusing to patients and families, no one knows how to provide it, and it can be harmful.

Here is the kicker from Kelemen:

“End-of-life care plans must be specific to the patient and family, reflecting their values and goals for that critical event and universal experience. To highlight this, we coach colleagues and families to consider every therapeutic intervention—for example, each medication, laboratory test, imaging study—and evaluate whether that intervention promotes the goal of alleviating symptom burden during the dying process. If it does (eg, oxygen administration in hypoxia), we continue it; if not (eg, the ubiquitous statin therapy), then perhaps it could be discontinued after reassuring communication with patients and families.”

Let’s treat dying patients as we would treat any patients: as thinking clinicians. Continue treatments that meet the goals of the patient and family, and discontinue treatments that do not. If the goals of the patient and family are to prioritize symptom management over life prolongation then ask the question of every test, intervention, or medication: Does this promote quality of life? Some life-prolonging interventions can be continued without impacting quality, if the patient so chooses. This will all depend on the patient’s preferences and the clinical context. That is why it is impossible to create a Comfort Care algorithm, bundle, or pathway - clinical reasoning is still required.

While my colleagues believe that we should use clearer language or work towards a unified understanding of Comfort Care, I would argue that we should get rid of it altogether. Do we need a term for taking care of dying patients in the hospital? If it does not indicate a clinical pathway or answer an urgent clinical question, then what is its benefit? Rather, in my experience, I have only seen it cause confusion, miscommunication, and unethical medical practice. Kelemen has identified a crucial blind spot in our collective medical practice, one that I fear is a symptom of a general misunderstanding and discomfort with how to care for the dying. Let’s teach our trainees to continue reasoning through clinical decisions to the end of a patient’s life, and to provide good medical care even if all that entails is sitting at the bedside to hold their patient’s hand.

Disclosure: Anne Kelemen and Hunter Groninger are dear friends and colleagues.

Michael Pottash MD MPH is a Palliative Medicine Physician at MedStar Washington Hospital Center and Assistant Professor of Medicine at Georgetown University School of Medicine. He is currently very curious to know who will end up sitting on the Iron Throne.


1 Kelemen AM, Groninger H. Ambiguity in End-of-Life Care Terminology - What Do We Mean by Comfort Care? JAMA Internal Medicine. 2018

2 Blinderman CD, Billings JA. Comfort Care for Patients Dying in the Hospital. New England Journal of Medicine. 2015.

3 National Institute on Aging. Providing Comfort at the End of Life. Accessed 2018. 4 Zanartu C, Matti-Orozco BM. Comfort Measures Only: Agreeing on a Common Definition Through a Survey. Am J Hospice and Palliative Care. 2013

Saturday, May 4, 2019 by Pallimed Editor ·

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