Choosing the path

Two Paths Through Pines

photograph by Mark A. Kawell

I’ve developed several metaphors that have proven helpful when talking to families facing catastrophic injury/illness and the possibility of death, and who need to understand end of life care in a meaningful context.

First, let's stop using the awful expression “withdrawing care.” None of us would feel comfortable taking something away from a loved one, especially when that something is literally keeping our loved one alive.

I use the term “redirecting care,” to emphasize our conscious decision to focus on a specific set of objectives – most notably comfort, dignity, and family closeness. This idea also makes better sense when considered in the context of what I describe to families as the three basic paths guiding care in the acute setting.

Curing – The first path focuses on curing the patient’s underlying illness or injury. I use antibiotic therapy and surgery as examples. Often, the patient’s own history includes one or more initial treatments directed at curing, so this is pretty straightforward for most people to understand.

When a patient’s condition is dire, it also helps the family see that the path to a cure may be highly uncertain at best, or even unrealistic, no matter how desperately they may hope otherwise.

Support for Healing – The second path emphasizes actions that support the patient’s own ability to heal. I point to interventions like the nutrition from high calorie/high protein tube feedings, and intubation with mechanical ventilation, as ways that we help a patient get better. I also point out that these measures are generally only needed for a limited time, even if that temporary period extends for weeks.

When a patient hasn’t improved or recovered despite our actions, the family usually finds it easier to understand that the possibility for healing has become more remote.

Comfort and Dignity – The third path is entirely devoted to keeping the patient comfortable in whatever way is required - controling pain, easing air hunger, and calming agitation; and to maintaining the patient’s identity as a person with friends and family who love them.

I also emphasize and identify ways that the family can join in providing this comfort and insuring this dignity.

Families are more at ease when they’re confident we’ll help keep their loved one comfortable, and when they know they’ll all be treated with respect and not left alone.

I’ve found that these three concepts of care support more meaningful discussions with families to determine the most appropriate goals of care. We’re less likely to get into misunderstandings and struggles, and more likely to focus on what we all agree is most important.

- - - - -

Captain Obvious comes right back

"My job is obviously never done."

I was researching back issues of the HPNA journal for an upcoming class on assessing and managing pain when our friend Captain Obvious stuck out his size-13 black boot and tripped me right in front of an article by Ann Marie Dose and colleagues, "The Experience of Transition From Hospital to Home Hospice - Unexpected Disruption."

As Captain Obvious pointed out earlier, while we may take much for granted in the course of our work, our patients and families are experiencing each element of the hospice admission and care for the first time, most often with little preparation, understanding, or context; and always with some degree of emotional stress. Our routine is their disruption.

The authors note:

"Many patients hospitalized at end of life report ‘‘going home’’ as the most important task remaining to achieve. In order to meet this meaningful goal, patients in this study were discharged soon after the decision was made to go home with hospice care. 

Although the physical act of traveling home was relatively problem-free for the study participants, family caregivers experienced burden as a result of getting things ready for the patient’s homecoming often on very short notice. (for example) While securing a hospital bed for the home may be of little consequence for healthcare professionals...for patients and family caregivers, the hospital bed took on a larger meaning and added to the overall disruption."

I'm reminded of an old joke that goes something like this - 

Q - What are the two differing points of view with regards to a ham and egg breakfast?

A - The chicken has an interest, but the pig is committed.

to learn more - Dose, Ann Marie PhD, RN, ACNS-BC; Rhudy, Lori M. PhD, RN; Holland, Diane E. PhD, RN; Olson, Marianne E. PhD, RN. The Experience of Transition From Hospital to Home Hospice: Unexpected Disruption. Journal of Hospice & Palliative Nursing: November/December 2011 - Volume 13 - Issue 6 - pp 394-402. 

Meet Captain Obvious

Ya think?

We're happy to introduce a new contributor to the HPNA Boston blog. Captain Obvious will join us on a semi-regular basis to point out things we already know, or should. Because a little review never hurt anybody, right?

In today's installment, Captain Obvious says:

We're hospice professionals. We take our work seriously. We draw on our accumulated knowledge and experience, as well as that of our colleagues, teams, agencies, and professional resources like HPNA. In the course of our practive we've likely encountered just about every possible situation at least once. And when we run into something new, chances are we know exactly who to turn to for help.

We anticipate and prevent problems. We're experts at assessing and addressing pain, delirium, nausea, constipation, dyspnea, depression, anxiety, and more. We can calculate the equianalgesic doses of multiple opioids. We know when to stop a measure that's not working, and have backup plans for just such instances.

We know how essential are our colleagues in chaplaincy, social work, medicine, music therapy, bereavement, and volunteer services.  We help get them through the door when families are reluctant or unsure about meeting them.

We work in settings of abject poverty one moment, and unimaginable wealth the next.

We've sat with patients as they've drawn their last breath, and with their families in the days leading up to, and following, that moment. We've been present for the unique beauty of a peaceful death, as well as the despair of a distressing one.

In the most difficult cases or during the most trying moments, we're in the home for an hour or two out of every 24.

The greatest challenge of our work is teaching those family members, friends, and others in the home all of the hours in a day, to become as expert as we are, but in a much shorter time, with much less preparation, fewer resources, even less context, and often under tremendous emotional pressure.

And they only get to do it once.

Our (sort of) weekly laugh at/with death

Where to sit?

Sean O’Mahony, a palliative care doctor,
with a patient, Deborah Migliore, in the Bronx. 

Photo - James Estrin/The New York Times

I came across the piece accompanying this photo in a recent issue of the New York Times. It's titled, "At the End, Offering Not a Cure but Comfort." It's the third in the series, "Months to Live." The first, "Fighting for a Last Chance at Life," appeared in May. The second, "Sisters Face Death With Dignity and Reverence," was published in July. (free registration required for access)

I highly recommend each one, and look forward to future installments.

I was most struck, however, by this reader comment:

I don't know if the picture at the top of the first page of the article was posed but one thing struck me. The medical personnel are on one side in opposition to the patient. It really made me feel the distance they were maintaining from the patient they were trying to help. Someone could move to sit beside her and perhaps the group dynamics would change and the information exchange would be enhanced. These seem like very caring team members, but little things can make a big difference....

It's an astute observation, and prompts a story of my own -

I once took over the care of a patient who was less than 30 years old, after a colleague who was working 7am-3pm left for the day. I've always worked 7am-7pm, and so was going to be with this patient for 4 hours. I had not previously cared for the patient or met any of the patient's family or other visitors.

The patient had experienced prolonged global cerebral anoxia the prior week, and was now suffering from the complication of profound autonomic dysfunction.

While the patient still had some brainstem activity, the overall prognosis was extremely grim, and had been from the beginning.

The patient's parents were divorced, but both had maintained an active presense. An older sibling was also closely involved in directing decisions on the patient's behalf.

A few days after the patient had been admitted, one parent and the sibling had advocated against a tracheostomy (trach) and percutaneous enterogastric (PEG) feeding tube for longer-term respiratory and nutritional support, saying that the patient would not have wanted to be kept alive under such circumstances.

The other parent held out some hope, and wanted to give the patient a chance for recovery, so the decision had been made to proceed with the trach and PEG.

The three family members had also agreed to revisit the patient's goals for care after one week, and that time had now arrived. The hospital's palliative care team had been consulted, and was going to meet with the family later that afternoon.

The parent who had held out the most hope was in the room when I took over, accompanied by a supportive sibling. They both sat to one side of the bed.

The attending physician and fellow from the palliative care team arrived at about the same time I did. I joined them as they entered the room to introduce themselves.

The parent wanted to wait until the patient's older sibling arrived before beginning any discussion, and anticipated that it would be at least another hour. The parent's demeanor was very guarded, almost angry. The two physicians gave me their pager numbers, and as they left I agreed to contact them when the sibling arrived.

There were now four of us in the room - the patient, the parent, the parent's own supportive sibling, and me. It was suddenly very still and quiet. I was the only one standing.

I felt a sob well up in my chest. I don't know why, exactly - maybe it was because the patient was not much older than my own two children, or because the parent looked so sad and lost.

I managed to stifle the worst of the sob, but it was all I could do to look at the parent's tear-filled eyes and simply choke out, "I'm so, so sorry."

I really meant it. There was nothing else that I could do or say. The parent nodded.

Then I squatted down besides the parent's chair. There was no other place for me to sit. We were all now looking in the same direction, towards the patient lying just above the level of our eyes in the bed several feet away.

A minute or two passed without a word, then the parent started to talk.

There's much more to the story, certainly. But the point I wanted to make, the point that was prompted by the reader comment, was simply that sometimes it's so important to sit next to somebody in order to actually be with them.

- - -

Poetry as reflection

Philippe Petit walks a tightrope

between the twin towers of the World Trade Center

August 7, 1974

Air
by W.S. Merwin

      Naturally it is night.
Under the overturned lute with its
One string I am going my way
Which has a strange sound.

This way the dust, that way the dust.
I listen to both sides
But I keep right on.
I remember the leaves sitting in judgment
And then winter.

I remember the rain with its bundle of roads.
The rain taking all its roads.
Nowhere.

Young as I am, old as I am,

I forget tomorrow, the blind man.
I forget the life among the buried windows.
The eyes in the curtains.
The wall
Growing through the immortelles.
I forget silence
The owner of the smile.

This must be what I wanted to be doing,
Walking at night between the two deserts,
Singing.

---

Chaplains at several of the hospice agencies where I've worked often open team meeting with a poem or similar reading, as a way to help us slow down our thoughts and reflect upon what we do. I like the tradition.

Learn more about Philippe Petit here, and about his WTC walk here.

MOLST, and more

Julie Bushey provided a comprehensive history at last week’s chapter meeting on the development of the new Massachusetts Medical Orders for Life-Sustaining Treatment (MOLST) form. Julie is chairperson of the palliative care committee at her hospital, and described how she is co-directing their plans to adopt MOLST by mid-April.

Julie noted MOLST is based on the ‘POLST paradigm.’ POLST is the acronym for Physician/Provider Orders for Life-Sustaining Treatment, which attempts to help patients more fully articulate their end of life wishes beyond the simple ‘do not resuscitate’ order clinicians are currently  familiar with.

MOLST enhances the two basic choices patients currently have regarding goals of care - the DNR (do not resuscitate with cardiopulmonary resuscitation and/or intubation/artificial ventilation), by providing the opportunity to indicate their wishes regarding additional options: intubation and artificial ventilation for a limited time; noninvasive ventilation assistance, such as with C-PAP; hemodialysis; artificial nutrition and hydration; and transfer to a hospital. There is also space for other measures not directly addressed on the form, such as antibiotic therapy.

MOLST is intended for patients facing potentially life-limiting events, such as a diagnosis of advanced cancer, progressive disease, trauma, or other acute event. In completing the form, the patient and clinician affirm they have discussed goals of care.

I found Julie’s presentation, and the discussion it generated, useful. But at the same time, the experience emphasized how even this latest attempt to encourage honest discussion between patient, family, and clinicians still falls far short of the ideal. It seems to me the greatest risk with MOLST and the tools which preceded it, is that the discussion often lacks meaningful context.

In other words, we can help patients and families fill out a form, but that’s not nearly enough. We risk ending up with a simple shopping list, when we really need to understand much more.

I think our patients and families are much better served if we also consider, internalize, and use a simple set of 4 questions developed by Susan Block to guide our initial and ongoing conversations about goals for care at end of life:

1. What do you know about your prognosis?
2. What are your fears?
3. How do you want to spend your time?
4. How much suffering would you be willing to endure, if it offered the possibility of more time?

The actual wording of each of these questions will vary, depending on who it is we’re talking to, and where they are in the overall process of achieving a peaceful acceptance of death. But we can keep the questions as written in mind, as we develop our skills in guiding conversations about goals of care at end of life.

Put another way - if you understand your patients and families based on their answers to Susan’s 4 simple questions, you’ll have much more than a signed form to guide the care they really want and need.

Here’s Atul Gawande speaking to Susan’s questions at the 2010 New Yorker Festival: