Today’s article by Barbara Brotman in the Chicago Tribune gives an excellent representation of what advance care planning conversations might look like at the end-of-life. Of course, advance care planning can occur at any stage of illness, and does not always have to address things like Do-Not-Resuscitate orders or refusing other invasive measures. It could simply cover what you value when it comes to your health care, and who you want for your Power of Attorney.

The article also explains more about Someone to Trust and what we are trying to accomplish in Chicago.

House Calls Radio debuts this Sunday evening Sept 6th at 10pm on AM 560 WIND. In addition to the latest health headlines, we will discuss the topic of advance care planning. My guest is Dr. Martha Twaddle, director of the Midwest Hospice and Palliative Care Center.

Show #1 Action Steps
1) Choose the person you would trust to make health care decisions on your behalf if you become unable to express your health care wishes.
2) Ask that person if they would be willing to act as your health care power of attorney.
3) Download the Durable Power of Attorney for Health Care form. (Here’s the Illinois form if you live in my home state)
4) Complete the form and have a witness sign it. You may also have your chosen agent sign the form but it is not required. No notary or attorney is required. You may choose successor agents in the event your primary agent is unable to fulfill their responsibility.
5) Make copies of the form.
6) Keep two for yourself, give one to your power of attorney, one to your physician, one to your successor agents (if applicable), and one to your lawyer (if applicable).
7) Have a conversation with your power of attorney about the things that are important to you when it comes to your health care. If you need help with this, make an appointment with your physician specifically to discuss advance care planning and ask for at least a 30 minute appointment. Bring your power of attorney with you. In Chicago, you can find a trained facilitator to help you with this process at Someone To Trust.

Have you heard the radio advertisements for legal firms that will send you a FREE living will? Have you heard them promise that if you call now, you can save even more money because they will include a FREE Health Care Power of Attorney? Sounds great, doesn’t it? What they don’t mention is that these documents are already available for free, and you don’t even need a lawyer in order to complete them.

The most important advance care planning document, and the one everyone should have regardless of age, is the Durable Power of Attorney for Health Care (DPAHC). This is the document that names someone to make decisions on your behalf if you ever are in a situation where you cannot express your own wishes. Most people, when asked, know immediately which person they would trust in that situation. It is important to name this person in writing, because state laws vary, and without the proper paperwork, it is possible that someone other than the person you want would have authority over your health care if you could not express yourself. For example, I recently admitted a patient to the nursing home whose granddaughter cared for her at home for many years. The patient had become very ill and could no longer express her own wishes, but she had expressed her wishes to her granddaughter during previous conversations. Unfortunately, they never completed a Power of Attorney for Health Care. The patient’s estranged son arrived on the scene and began to demand a course of management that went against the patient’s wishes. In spite of the granddaughter’s protests, the nursing home was obligated by law to follow the wishes of the son, because Illinois law gives adult children priority over grandchildren for decision making authority when there are no papers. Such a scenario could have been avoided had my patient completed her DPAHC and named her granddaughter.

If you live in my home state of Illinois, the official DPAHC form can be downloaded for free here. Most other states make their forms available as well, and you can find them by doing a web search for “(your_state) power of attorney for health care”. Once you have the form, you simply need to identify your person of choice, fill in their name and contact information, and sign the form. In Illinois, you will need one witness to also sign the form. You don’t need an attorney, and you don’t need a notary public. You don’t even have to have your decision-maker sign the form. I still recommend this, because the person you choose needs to know of the important responsibility you have given them.

There are other sections of the form that allow you to express specific wishes, such as a procedure you definitely would or would not want, or specific organs you would want donated. It is not necessary to fill out these portions, though it may be helpful for your decision making agent to know this information. However, he or she is not obligated to follow what is written there. That is why the best approach is to have a conversation about your wishes with the person you trust. This will give them the opportunity to ask you questions and to see and hear directly from you what is most important about your individual wishes.

Another advance directive is the living will, which gives you the opportunity to state that you would not want to be kept alive artificially if you contracted a terminal illness and doctors believed you had no hope of recovery. This document also gives you the opportunity to define specific courses of action. I have run into problems with this document and I do not find it as useful as the Power of Attorney. One problem with the document is that you can fill it out and never tell anyone. If you were to become very ill, unless someone has a copy of your living will, it may never be followed. It is much more powerful to have a living, breathing advocate (your Power of Attorney for Health Care) who understands your wishes and can help guide your doctor through the myriad of possible scenarios that can occur if and when you become ill. I do not have a living will, but I do have a Power of Attorney for Health Care. I know the President told us recently that he and his wife have a living will, and that it is important to have one, but I think it is far more important to have your Power of Attorney for Health Care.

Once you have filled out your advance directive, keep a copy for yourself, give a copy to your decision maker, and give a copy to your doctor. There is a movement to standardize these documents and make them more accessible across health care systems. In Chicago, a large coalition called Someone to Trust is working to accomplish this goal for the first time in a large, multiethnic city. Google Health recently added a section where you can scan and store these documents so you can authorize your agent or doctor to access them in time of need. If you feel comfortable using this service it is a good resource.

For more information on Advance Care Planning, visit the website for National Health Care Decisions Day.

Today while driving between nursing homes, I heard Rush Limbaugh talking about the health care reform bill’s Advance Care Planning Consultation section. He, like some other conservative talkers, was complaining that the government was mandating these consultations as a way to usher patients towards an early death in order to save money. In my previous post I explained why this was an unfair characterization of Section 1233, and that it makes sense to reimburse doctors for the time they spend talking with patients and families about their health care wishes. I decided to call in, and I actually got through. “Dave in Chicago, you’re next..” Rush said.

I explained that I was a physician, and that there are many aspects of the current health care reform bill that I disagree with, but that this provision was actually a good idea. I said that I often take extra time to ask my patients about choosing their power of attorney and about their end-of-life care wishes, and that it was smart of Medicare to encourage these conversations by providing a small reimbursement to doctors who initiate such discussions, since the current structure requires doctors to essentially offer this service for free. I started to explain that the bill actually does not mandate these conversations between doctors and patients, nor does it mandate their content. Then I realized that Rush was talking and my voice was turned off. He once again incorrectly insisted that the bill will mandate a consultation promoting “death care,” a term he claimed I had used. He said that I was welcome to have those conversations with my patients, but that anyone who had a doctor like Dave in Chicago who insisted on talking about “death care” should find a new doctor. I tried to protest but quickly realized that my voice was turned off and that our “conversation” was over.

Rush Limbaugh’s reaction to my call was a stark reminder that many people completely misunderstand palliative medicine and end-of-life care. While he railed on about doctors being mandated to discuss death with their patients, I could sense an underlying fear, perhaps about his own mortality. Death is inevitable, and one of the greatest gifts I can give my patients is to help them look ahead to possible scenarios and to express their thoughts and wishes about their medical care while they are still able. Those of us who practice this skill do not attempt to usher our patients toward an early death for the sake of utilizing fewer health care dollars. All too often I have watched patients and families undergo painful and invasive treatments which are unlikely to extend life or provide any healing, simply because they felt they were obligated to submit to such treatments. No doctor had ever laid out the real picture, that their prognosis was poor and their choices were limited by their disease. They needed to hear that their realistic options had shifted away from the best course for avoiding death to the best way to maximize the quality of life remaining. They needed to know that there was another path, and they probably needed to hear that from a doctor. Many doctors avoid these conversations because they are uncomfortable or awkward. Doctors who talk about death with their patients are brave.

I do understand the fear that more government-sponsored health care will lead to rationing and could result in seniors being denied services simply because of their age. That is a real concern. It is a reason I am not in favor of more government involvement in health care. However, please do not make the same mistake Rush Limbaugh made today and equate coversations about end-of-life care with promoting “death care.” Expressing your wishes to your doctor, and asking about options if and when you become ill, serves to promote patient choice and control, not take away from it. I still think government-run health care is a bad idea, but as long as Medicare pays for most seniors’ health care, I think it is admirable that they are looking at ways to make it easier for doctors to assist their patients with advance care planning.

Part of the proposed health care reform bill that I like is the idea to reimburse physicians for having an “advance care planning” discussion with their patients once every 5 years. This is something I do with my patients often, and I have wished many times that Medicare would recognize the value of this skill, and the time it takes to perform it, by offering specific reimbursement for the discussion. Unfortunately, some Republicans are saying that supporting a patient-physician conversation about goals of care and end-of-life options will “start us down a treacherous path toward government-encouraged euthanasia“. I disagree.

Section 1233 of HR 3200, the proposed health care bill, is titled “Advance Care Planning Consultation”. It allows a physician to be reimbursed for leading his or her patient in a discussion about the patient’s wishes in certain medical situations. I find these discussions to be very helpful for patients and doctors. Patients have the chance to think through different scenarios and ask questions about what to expect. They also have the opportunity to put these wishes in writing, and to select a surrogate decision maker for a situation in which they are unable to express their own wishes. Doctors can gain insight into their patient’s preferences so that, when they become ill, the doctor knows better how to care for them. Family members are often involved in these discussions, and the process helps prepare the entire family for unexpected events so they don’t have to panic in a crisis. These discussions often occur around the time of a new diagnosis, a serious change in condition, or a change in living situation such as a move to a nursing home.

The bill does not mandate these discussions, as some commentators and even congressmen have suggested. It simply rewards clinicians for taking time to assist their patients with advance care planning, if they chose to do so. The bill also does not mandate the specifics of the conversation. It mentions many of the standard treatments that are discussed in an advance care planning session, such as intravenous antibiotics, artificial feeding and hydration, and hospitalization. The bill does not mandate what is said or decided about these issues; it simply allows that they can be part of a conversation that would qualify as advance care planning.

My only concern about a bill like this is that it recommends: “An explanation by the practitioner of the continuum of end-of-life services and supports available, including palliative care and hospice, and benefits for such services and supports that are available under this title”. I am a staunch supporter of palliative care and hospice, when appropriate, but in states where physician-assisted suicide (PAS) is legal, the phrase “continuum” could be used to mandate that physicians offer this option to their patient in any advance care planning discussion. However, the bill states that this discussion can include such an explanation, not must, so the bill as it is currently written would not mandate offering PAS even where it is legal.

Though I have many problems with HR 3200, and I hope it does not pass in its current form, I am encouraged that reformers are recognizing the value of advance care planning, and that they are considering reimbursing physicians for taking time to providing this valuable service to their patients.