The challenge of creating a palliative care program

The orders came indirectly from the government.

Reduce hospital re-admissions. Cut costs.

So, the hospital contacted the local hospice-palliative care center and asked for help. Of course, overwhelmed with work and understaffed, the project was handed off to me.

My task sounded simple. Create a palliative care program at the nursing home. But as I gathered for the first meeting with the administrator, social worker, and clinical staff, I knew there would be resistance.

And, in fact, I had my own feelings of reticence. Although I had learned much over the years, I was not trained in palliative medicine. As I gazed around the room, I realized that neither were any of my colleagues.

***

I looked Nancy squarely in the eye as I explained my vision. Our beginnings would be simple and humble. Admissions would flag appropriate patients based on predefined criteria. Then social work would approach each patient and family within seventy hours and have “the talk.”

When Nancy heard her profession mentioned her ears perked up and her face twisted in confusion.

What do you mean, “the talk”?

Ready for her question, I pulled out a POLST (physician orders for life sustaining treatment) form and passed it around the room. The two page document was a series of basic questions.

Do you want to be resuscitated if your heart stops?
Do you want to be hospitalized if your condition worsens?
If you are unable to eat on your own, would you want a feeding tube?
Can IV fluids or antibiotics be given?

Attached, on the back, was a series of questions I had created myself.

Do you have a religious affiliation?
Would you like to be visited by clergy or a therapist?
If you knew you were dying, would you rather pass at home, in a hospital, or in the nursing home?
What are your health care wishes for the next six months?
What is more important to you: quality or quantity of life?

***

I looked around the room as the participants read the form. Nancy was becoming more anxious.

Isn’t this the doctor’s responsibility?

I answered her with a tinge of melancholy.

Yes, it is the doctor’s job. But it’s also the nurse’s, social worker’s, and therapist’s job also. It’s all of our jobs.

***

We met each week. Nancy presented new patients, and then the nurses and I would discuss clinical issues and pain control. The difficult cases were referred to the associated palliative care doctor from the local center.

During the first few sessions, I continuously hammered Nancy on the POLST form. For each patient, I wanted to know the answer to all of the questions. At first she rolled her eyes, but as time went on she got the hang of it.

A transformation occurred during our fourth meeting. We had ten people in the program. As Nancy presented each patient, I could sense a difference in the tone of her voice. She was now approaching the project with a new sense of zest and zeal.

At the end of the meeting, I asked her what was going on.

Well, you know Mr. Smith? He passed yesterday.

Mr. Smith had end stage dementia. He was in the process of dying for months, but his physician had not bothered to talk to the family about end of life care.

His daughters and I completed the POLST form a few weeks ago. So when he started to die, we were all on the same page. He passed quietly in bed without ambulances, IVs, or CPR.

I could see the change in her posture. She got it. She now saw how powerful these conversations could be. I smiled and congratulated her on how well she was doing such an important job. She looked down embarrassed.

It’s not like I saved his life.

Our eyes met.

No, you did something most doctors have forgotten how to do.

You saved his death.

Jordan Grumet is an internal medicine physician who blogs at In My Humble Opinion.

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  • http://www.practitionersolutions.com Niamh van Meines

    Very well written. Thank you. The last line was a clincher! You have the support of many of us who want to see quality appropriate care for people who are dying. My mission is to teach it in nursing school so it does not need to be a novel idea that is presented so late in the trajectory of a patient’s disease.

  • Anonymous

    “You saved his death.” 
    Thank you for writing this. I wish more providers and facilities would implement something like this. 

  • mapfel

    I., too, applaud your statement that “You saved a death “.
     
    We started a palliative care program at our hospital 2 years ago and I was asked to be on the Medical Director. I have been a family physician for the past 35 years and over the past 5 years have become one of the Physician Champions for POLST in California. Since POLST became a legal document in California in 2008, many Skilled Nursing Facilities have adopted it to replace their Preferred Intensity of Care/Treatment (PIC/PIT) form. We have encouraged a multidisciplinary approach to the POLST conversation, since physicians often do not have the time or skills for some of these lengthy conversations. We offer many training programs to assist in developing the skills to have a good end-of-life care conversation. Currently, in California there are 26 community coalitions that are working on this program.Of note, POLST as a voluntary form that can not be required by a facility. – For more information please go to : http://www.capolst.org
     
    We do anticipate that the use of Palliative Care programs will indeed decrease the readmission rate for many patients, but more importantly will do so by providing more appropriate care for these people.
     
    This Thursday in San Diego we will be having the 2nd National POLST conference with attendees from over 30 states who are interested in this program.
     
    Mark Apfel, M.D.

  • Anonymous

    One small change to how this wonderful story is perceived (i.e., a change to the reality of the situation): “We saved a death.”  It took a team to make this peaceful process occur.  From what was posted, I would offer the following insights for making the creation and implantation of such palliative care challenges even smoother and more effective.
    1. For whoever is leading the effort, you are not alone so come at it from a “we” perspective.  That may mean leaving your status and ego at the door.2. It will take the team of a MD, nurse, social worker, administrator, and all other appropriate clinical staff to create (the root of creative) the process that will work for your organization and your patients.  How each  team member at the table views death and constant pain in the patient, and their role (i.e., their performance)  in it will occur to them differently than to anyone else precisely because how people perform correlates to how situations occur to them.  And our training, role, and prior experiences will create the filter through which we view life including the current situation or project.3. Talk about those viewpoints and how each member of the team views and feels (i.e., thinks and feels) about the palliative care and dying/pain management process.  This conversational environment is the bedrock upon which your palliative care program will be built.4. Define as a group what is most important to each person on the team in the context of the palliative care program.  Out of this discussion will emerge a common cause the team can rally around and the core values that will come to define how we as a team will carry out our work.5.  With this foundation work done, define the outcome we strive for with each patient. Be clear and specific so there is no ambiguity.6. Next list out what assets you have as a team to work with.  Of course it will include how much is in the budget, but things like the POLST sheet is an asset, the skills of each team member are assets, the available drugs in the formulary, the equipment at hand, the availability of consultants, even the passion of each team member to the common cause and core values are all assets.  Be creative and thorough as you list these out.7. Next comes the process, behaviors, or action plan that will be the framework for how palliative care patients and family members will be cared for as they travel through this process.  And the process isn’t lock step; allow for variability.8. Now a few vital questions you must answer:     A. Do we have the assets we need to achieve the outcome we desire?     B. Do we have the assets needed to implement the action plan?     C. Will this set of behaviors accomplish the desired outcome?  (This is the hardest question because the evaluation comes from those who have created the action plan)All of this happens not by fiat or dictum from high status people at the table (physician or administrators being the most likely high status players, although it could be others as well – especially highly regarded informal leaders), but from the collaborative efforts of team members who do not care for the personal glory of having the best idea, but from all team members who strive for the best outcome for the patient and the family.The strength of the collaborative effort will result in better plans and, I believe, better outcomes as team members experience each other differently as you create a new future for your patients in their final days or in their painful recovery.  It is out of such a collaborative effort that fully integrated, cohesive teams emerge and are able to achieve so much more than any one person ever could.

  • Anonymous

    As long as partisan Republicans like Senator Chuck Grassley are labeling palliative care as “death panels”, the future of palliative care doesn’t have a chance of gaining any serious support. Fact is, unless we get serious about palliative, regardless of partisan politics, we will go broke trying to keep brain dead people alive on breathing machines and feeding tubes. My guess is that the next step doctors and hospitals will be pushing is to transfer what’s left of a person into a petri dish just to keep the cash register ringing. Shysters!

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