Palliative Care

[polarbebe]

Since there is no palliative care section on this forum and palliative care unfortunately is a significant part of critical care.  I thought this may be helpful to some PAs that deal with acutely critically ill patients.

First determine your states requirements for a health care proxy (HCP).  If a family member declares themselves a HCP and the form is not in the chart or EMR, not duly executed with two witnesses (at least in my state) then they are a surrogate and NOT a HCP.  Only a patient can assign someone a HCP and that threshold for capacity is different than say code status.  So a mildly demented patient possibly may assign a HCP but to make themselves DNR would be much more difficult (probably unlikely), threshold is much higher and obviously must understand risks/benefits/alternatives on this life and death decision.

If the patient lacks a HCP form then follow your state's guidance for surrogate of highest priority.  However in my state: 

1) Guardian (must have guardianship papers signed by a judge, you must have possession of said papers and they must include medical decision making).  Generally guardians of patients with cognitive issues can not be made DNR but must go through the courts.  Check with your ethics/legal department for your state.

2) Spouse or common law marriage.  Your state may not recognize common law, check with your ethics/legal department.

3) Adult children.  All adult children over the age of 18 have equal priority as surrogate, there must be consensus.  Thus if one child says DNR and one says full code it defaults to full code.  Generally, lets say there are 5 children, I won't talk to 5 children (other than a conference call), I will ask one to be the spokesperson and that one child will make the final decision after speaking to all the children.

4) Parents.

5) Other relatives (siblings) and more distant relatives (aunts, uncles)/friends will generally need a distant relative/close friend statement.  Check with your ethics/legal department for the specific verbage.

Do not make the mistake of speaking to the family member that is easiest to reach (bedside) instead of the person of higher priority.  If that family member says DNR but the family member of higher priority says full code; you may be liable.

A surrogate of higher priority can not defer the “power” to make medical decisions to someone else (it should always follows the state guidance).  For example, the spouse can not say I want “my brother a doctor” to be the surrogate unless all persons (patients adult children, pt parents) of higher priority defer to this patients’s brother.  Document everything. 

Once you have determined you are speaking with someone qualified to make decisions...

Manage expectations.  Manage expectations.  Manage expectations.

The first time they roll into the ICU, they are all "critically ill" or "unstable".  I tell every ICU PA I train to NEVER use the term "stable" (unless they are being transferred to the floor and not on comfort care) because family members are in shock and they will hear half of what you say.  I can't count the number of times, a family member calls for an update I say they are on multiple forms of life support or multiorgan failure and they are hearing this for the first time they have been told the patient is "stable"; this makes it very difficult to move forward on goals of care discussions especially when the patient is declining and not expected to survive.

General tips:

Find a quiet private place to talk.  Seating is important for them.  Provide tissues.

Sit down with the family member eye to eye.  Studies shows this makes the meeting feel longer, shows empathy.  

Use an interpreter and not a family member.

Be honest and empathic. 

Offer a chaplain.

Explain visiting hours, offer virtual visits.

Use layman's terms (personally I use brain damage instead of anoxic encephalopathy, life suport instead of ventilator or vasopressors, coma instead of "sleepy") because if they don't understand what you said then they can not make an informed decision on the care the patient receives or on code status.

By the time they roll into the ICU, they already have an understanding from the ED staff.  Or if this is a follow up conversation (day 2 or 3 in the ICU) I ask: "Could you tell me why your loved one is in the ICU?"  First the more a family member speaks the longer the meeting seems to them.  Second, it allows you to assess their understanding and you can fill in any gaps in their understanding.  Once they have a layman's understanding then if the unfortunate patient is decompensating you won't be starting at square one with this difficult conversation on code status.

Never take away hope unless the patient is actively dying (ie 3 vasopressors, pH 6.9, lactate > 20).  I use terms like "very worried for him/her", "taking it day by day (or even hour by hour if more sick)" if appropriate.  

Generally I briefly ask about code status on each patient on ICU admission but will go a little further in depth for those patients not expected to do well (age > 90 y/o, multiple comorbidies, declining health with 3 prior hospitalizations in the prior year, etc.) and ask family to think about what the patient would want (not what the family wants, they always want their loved one to live).  One phrase I have heard used, "If xxx was standing here looking at themselves, what would they say/want?"

Allow them a quiet place to gather themselves or talk amongst themselves after your meeting.

Palliative care generally is consulted for difficult family dynamics (one wants full code, the other doesn't), terminal illness so palliative care can follow to the floor, hospice, additional support for family, complicated grief.  If your hospital offers child/life for support for the patient's children that can be useful.

I am sure other things will come to me later.  Feel free to add anything you think may be helpfu.

 

 

 

 

Edited February 7, 2022 by polarbebe
Fixed grammar

[EMEDPA]

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