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How can I prepare in advance to have the best chances of having my desires respected?

And how do I decide what beliefs and values are important to me in these decisions, and make sure they’re considered in my decision-making?

 

It’s not pleasant to go to the dentist.

But if we don’t, we ultimately pay a price. It won’t be pleasant to prepare for your ultimate demise, but the penalty for not preparing can be far worse than losing your teeth. And once prepared, you’ll have the peace of mind of knowing that you’ve dramatically increased your chances of insuring that your own personal wishes will be respected and your loved ones will be spared unnecessary distress.

Let’s break our preparation down into some simple steps.  Click here for a downloadable pdf copy of Advance Dir Planning Checklist May 16 2016.

Step 1: Understand what goes on near typical end of life situations, and what treatment decisions might be likely.

Step 2: Explore your own feelings and thoughts in advance regarding various treatment options, and consciously apply your own values and beliefs to define your desires.

Step 3: Draft your definition of your specific desires.

Step 4: Discuss your desires with your selected Proxy and your Primary Care Physician, and finalize your desires.

Step 5: Finalize and document your desires in valid state specific forms.

Step 6: Distribute copies of your documents.

Step 7: Consider sharing your planning and/or your specific desires with a broader circle of loved ones, so that if a decision falls on your Proxy, they will have broad support.

Later – Repeat this cycle and update or reaffirm your desires.

Below we’ll explore each of these steps in more detail.

 

Step 1: Understand what goes on near typical end of life situations, and what treatment decisions might be likely.

Talk to your friends and family. Ask them what their experiences have been with other friends and loved ones who have gone through the final stages of their lives. What have they learned? How do they want their own future treatment to be shaped by those experiences? Spend a few moments checking out other’s experiences at social media sites, such as The Conversation Project’s Your Stories, the comments (>700) after the article How Doctors Die, or POLST Stories. Seek to understand the realities of the potential benefits and adverse effects on quality and length of life for the likely end of life procedures.

Jot down the names of people you’d like to talk to.

 

Step 2: Explore your own feelings and thoughts in advance regarding various treatment options, and have consciously applied your own values and beliefs to define your desires.

Talk to your religious mentors, if appropriate. Are there other beliefs or values based on your nationality or upbringing? Is there general guidance I want to provide to describe my own definition of the point at which natural life has ended? Are there specific treatments that I wish to rule out (for example, narcotic pain medications)? Are there scenarios that you’re afraid of?

Make notes to yourself about things you would and would not like to see done to and for you.

 

Step 3: Draft your definition of your specific desires.

This includes guidance as it pertains to various quality of life thresholds, such as:

 

If I have no pulse and am not breathing, my desire is;

_____ Use all available means to resuscitate me.

_____ Do Not attempt Resuscitation (DNR/no CPR). Allow Natural Death.

 

If I am permanently unconscious (am unaware of the people and surroundings around me and have little chance of recovering consciousness), my desire is;

_____ Withhold medical care and allow me to die a natural death.

_____ Only provide me with comfort measures.   This generally means to relieve pain and suffering through the use of medication by any route (oral, IV, etc), positioning, would care and other measures. Use oxygen, suction and manual treatment of airway obstruction as needed for comfort. DO NOT (or DO) transfer me to a hospital or higher acuity setting for life-sustaining treatment. OR Transfer me to a hospital only if comfort needs cannot be met in my current location.

          Treatment Plan = maximize comfort through symptom management.

_____ Provide me with Limited Additional Interventions. In addition to providing me with comfort measures, use medical treatment such as antibiotics, IV fluids and cardiac monitoring as indicated. No intubation, advanced airway interventions, or medical ventilation. May consider less invasive airway support (such as CPAP, BiPAP). Transfer to hospital if indicated. Generally avoid the ICU.

          Treatment Plan = basic medical treatment.

_____ Provide me with Full Treatment. In addition to comfort measures and limited additional interventions, use intubation, advanced airway interventions, and mechanical ventilation as indicated. Transfer to hospital and/or ICU if indicated.

          Treatment Plan: Full available treatment.

 

If I develop new conditions while permanently unconscious (such as a heart attack or stroke);

______ Treat the new conditions consistent with my choice of comfort care, limited additional interventions, or full treatment above.

______ Do not treat the new conditions.

             Specifics: __________________________________________

 

If I am suffering from permanent confusion and am unable to remember, understand, make decisions, recognize loved ones or have a clear conversation with them (this includes diagnosis of Alzheimer’s and dementia), my desire is;

(same choices as for loss of permanent consciousness above).

 

If I am dependent on others in all activities of daily living (ADL’s) and am no longer able to talk or communicate clearly or move by myself; and I depend on others for feeding, bathing, dressing and walking; and rehabilitation or other treatment will not help, my desire is;

(same choices as for loss of permanent consciousness above).

 

If I have an End State Illness that has reached it’s final stages and no longer responds to treatment, my desire is;

(same choices as for loss of permanent consciousness above).

 

If I cannot eat or drink naturally, my desire is;

_____ No artificial nutrition by IV or other means.

_____ Defined trial period of artificial nutrition by IV or other means. If after _____ days I have not resumed the ability to eat and drink naturally, then cease artificial nutrition.

_____ Long term artificial nutrition by IV or other means. Continue indefinitely. OR   If after _____ days/weeks/months I have not resumed the ability to eat and drink naturally, then cease artificial nutrition.

 

If, in accordance with my wishes for comfort measures, limited additional interventions, or full treatment above, my physicians recommend experimental treatment or other treatments or procedures that my insurance (or Medicare) consider excluded benefits, my desire is;

_____ No excluded benefits under any circumstances.

_____ Apply any treatments that have any chance of restoring me to mental competence.

_____ Apply any treatments that my physician can demonstrate have a better than _____% chance of restoring me to mental competence, and cost less than $______ (or any amount).

_____ Apply any treatments that have any chance of prolonging my life.

_____ Apply any treatments that my physician can demonstrate have a better than _____% chance of prolonging my life, and cost less than $______ (or any amount).

Upon my death;

_____ I would like to donate my organs and/or tissue.

_____ I do not wish to donate my organs and/or tissue.

Specifics: _______________________________________________________

 

 

Other things I want my providers and Proxy to understand about me when making decisions on my behalf:

(anything you feel it’s important for them to know about you, your beliefs, and your desires)

 

Step 4: Discuss your desires with your selected Proxy (or Proxies) and your Primary Care Physician, and finalize your desires.

The reason Step 3 resulted in a draft is that your conversations with your primary care physician and your Proxy may result in clarifying your understanding or modifying how you express your desires. Your goal in discussing with your PCP should be to benefit from their experiences to help you make the most informed decisions possible, and to request that they create and sign a POLST if appropriate to your circumstances and state. But recognize that many doctors may not be ready to have this conversation, and even when ready, it may be uncomfortable for them as well. Your primary care physician should be able to provide you with detailed descriptions of what it means to receive treatments such as CPR, feeding tubes, and surgical procedures during the late stages of life, as well as telling you about circumstances they’ve experienced where these treatments either did or did not follow the patient’s wishes, and what could have been planned better to increase the chances of the patient’s wishes being respected.   Some physicians can provide access to videos that illustrate what these experiences actually look like.

v

“Many people think of CPR as a reliable lifesaver when, in fact, the results are usually poor. I’ve had hundreds of people brought to me in the emergency room after getting CPR. Exactly one, a healthy man who’d had no heart troubles (for those who want specifics, he had a “tension pneumothorax”), walked out of the hospital. If a patient suffers from severe illness, old age, or a terminal disease, the odds of a good outcome from CPR are infinitesimal, while the odds of suffering are overwhelming. Poor knowledge and misguided expectations lead to a lot of bad decisions.”

Ken Murray, MD, Clinical Assistant Professor of Family Medicine at USC, ‘How Doctors Die

Step 5: Document your desires in valid forms specific to your state.

Each state has different formatting and content requirements.   Try to be as comprehensive as possible in documenting your desires, but if the document template you’re working with doesn’t allow you to fully express your desires, and you can’t add an appendix or some other attachment, then provide the additional guidance to your Proxy so they have a clear understanding.   Based on your state, in addition to your own signature your documents may require signatures from witnesses, your PCP, or a notary public.

Navigate to Caringinfo for your state specific forms in pdf format, print, and fill them out. Or go to Guidance on State Specific Legal Forms for guidance specific to your state, including some state forms that can be filled out on line. You want to come out with some combination of Advance Directive, Living Will, and an assigned Proxy (either from within the Advance Directive or from a separate Durable Healthcare Power of Attorney).   If there is content from your draft that you can’t seem to get into the form, consider trying to include your finalized detailed desires from Step 3 as an attachment or exhibit. If not, make sure your Proxy has a copy.

A word on state-by-state variations in terminology and legal documents …

Each of our States and Commonwealth’s have the latitude to define their own terminology and documents to document the concepts and achieve the goals of the topics covered in this chapter (thanks, Founding Fathers!). In an effort to avoid confusion, some of our advice will point out these variations where they exist.

 

Step 6: Distribute copies of your documents.

Your originals should remain either in yours or your Proxy’s possession, but should be readily available when needed. At a minimum, you, your Proxy, your Primary Care Physician should all have copies, and your PCP should make your copies part of their EHR/EMR. Scan the documents to create electronic copies if desired, and consider storing electronic copies somewhere where you, your Proxy, and selected family members can access them quickly on demand so they can quickly be made available to a hospital or emergency care provider.

Possible storage options include the US Living Will Registry, which offers personal accounts that allow you to upload and store your documents in a secure database that your providers can later access once you’ve given them permission. Registration includes an annual update reminder to encourage you to keep your documents current, and a wallet card with your registration # for later reference. There is a fee for a 5 year membership, with discounted extensions.

Alternatively, you could consider mainstream cloud-based storage such as iCloud, Box, DropBox, etc. Consider creating a separate account used only for these documents, but recognize that would mean having a unique UserID and password, which must accessible to you and at least your Proxy when needed. Keep in mind that you are accepting personal responsibility for the security of your documents and the personal information they contain, but also understand that you are not violating HIPAA in any way. Your providers are obligated to certified and audited secure storage locations for protected health information, but you can put documents any place you choose as long as you are satisfied that they are secure enough for your personal standards.

Optimally, electronic copies would also be part of your Personal Health Record.

 

Step 7: Consider sharing your planning and/or your specific desires with a broader circle of loved ones, so that if a decision falls on your Proxy, they will have broad support.

This is, of course, highly dependent on your personal circumstances. But recognize that being a Proxy is a difficult job, especially when all of your loved ones are in distress over your condition. Absent advance communication of your desires, some (or most, or all) of your loved ones will likely be biased toward aggressive measures to prolong your life. If your desires are anything less than that, you may be able to make it easier on everyone by communicating in advance to the broader audience.

 

Later …

Over time, go back over this cycle and update or reconfirm your desires. Keep in mind that state laws and the formats and content of the documents in question, specifically including POLST’s in states that are less than ‘Mature’, are changing rapidly. While you’re young and healthy, this review might be every 3-5 years, or if you acquire a chronic condition or wish to change your Proxy. As you grow elderly, it makes sense to review annually or more often if your personal conditions change.

 

Remember:  We coach, support, educate, and empower.  We illuminate options you may not have known you had.  But we don't decide what's right for you in your unique circumstances; only you can do that.  And we don't provide medical, financial, or legal advice; nor do we replace the valuable counsel of those who do.