Blog Updates: Newsletter, Interviews, Resource Pages, Listen Feature

I just completed this month’s newsletter.  The feature article is “Communicating with the dying.”  To get a copy, sign up on the lower side of the blog and I will send it out to you.   If you want to get blog updates, notices about new blogs being posted, sign up on the upper side of the blog.  They are separate services.  You are welcome to both.

I feel very fortunate to be able to include a thank you I just received from Elizabeth P in New Jersey.  “Viki helped me in my crisis. There was no wait, no down time, and she knew her stuff!”

She called for help a month ago and just wrote back to tell me that things worked out well.  I was so glad I was able to help.  She was in a medical crisis with her mom and the doctor was not listening and was going against her mother’s wishes.  I told her what steps she needed to take and gave her insight into how to communicate best with the physician. I wish Elizabeth and her mom the best.

There are more Blog Talk Radio interviews scheduled.  They are listed on the side panel.  To hear the show, you can listen live through http://blogtalkradio.com/KindEthics, or you can listen on the phone at 347-945-5152.

You can also use 347-945-5152 to call in to ask questions live.  If you want to listen later, then you can listen through the computer, just click on the link on my site, or download it through itunes.

If you know someone who is doing amazing work that I should be interviewing, please have them contact me.

I was happy to hear that people in Indiana and Maryland used my resource page to get their state-appropriate advance directive.  I just hope they will fill them out.  (smiling)  If anyone needs help with this, email me viki@kindethics.com

I also added a California POLST section to the resource page.  POLST stands for Physician Orders for Life Sustaining Treatment.

Lastly, my great blog strategist and social networking expert, Michelle Price, AThirdMind.com, just installed the listen to the blog feature.  Now you can press listen and while you are doing your housework of playing with your cat, you can listen to the updates.  You can also go through and download them.  I wanted to make sure that this website is accessible to all those with types of needs.

Have a kind and respectful day.

What nobody is telling you about your Advance Directive

For the patient and family:

The doctor just handed you an advance directive and told you to fill it out. What do you do now? Do you want a feeding tube? Do you want to be put on a ventilator? How do you answer these questions? Do you even know what these questions mean? The doctor is asking you the wrong questions. What he should really be asking is, “How do you want to live after a serious illness or injury? What kind of condition/suffering would you be willing to endure?”

The advance directive form in not just a death form, it goes into effect when you can no longer think clearly enough to make your own decisions. Now, maybe you will only be incapacitated for a short period of time and someone will need to make your medical decisions for a few weeks or maybe this will be forever. An advance directive is one way to stay in charge of your life even when you can’t speak for yourself.

So the right question is, “What kind of life would you want to live if you your mind no longer worked well or if it didn’t work at all?” Now for some people, any condition is okay as it is God’s will to determine how we live and when we die. But for others, you can’t think of anything worse than living in a nursing home, wearing diapers, having other people feed you and not being able to recognize your loved ones. But how will your doctors know what you want if you don’t tell them? Doctors know how to practice medicine. But what they don’t know is what would make for a “meaningful recovery” for you. So you have to tell them.

Here is my “Meaningful Recovery Statement”:
“I value a full life more than a long life. If I have lost the ability to interact with others and have no reasonable chance of regaining this ability; or if my suffering is intense and irreversible, even though I have no terminal illness, I do not want to have my life prolonged. I would not then ask to be subjected to surgery or to resuscitation procedures, to intensive care services, or to other life-prolonging measures, including the administration of antibiotics, blood products or artificial nutrition and hydration. I also believe that the financial and emotional burden on my family should be considered in making these types of decisions.”

Because I have written this in my advance directive the doctors will know what is important to me. Of course this doesn’t have to be your statement. Write one that is meaningful to you and attach it to or write it on your advance directive.

One more thing, please address the issue of terminal vs. non-terminal situations. If you are terminal, then it is important your doctors know where and how you would want to die. If you are only severely disabled but not going to die soon, then you need to let them know what kind of life would be tolerable for you. The best way to be protected is to write it down.

If you would like my special report on “An Insider’s Guide to Filling out the Advance Directive” and other special reports in the future, sign up for my newsletter and once a month I will send you inside information.

The important question we forget to ask our patients.

For Healthcare Providers:

When you hand your patient an advance directive you may be making a critical mistake. We usually ask the patient, “Would you want a feeding tube? Would you want to be put on a ventilator?” The patient doesn’t even know what these questions mean. Most of our patients are medically illiterate. And if we get the answers to these specific treatment questions, it may get us into trouble when the medical condition they are brought in for doesn’t exactly match the situation that was discussed. For most people, it is not the specifics of the medical treatment but the big picture of their life that will matter. So what you really should be asking is, “What kind of life would they want after they are discharged from the hospital.” Ask them, “What kind of life would you want if you your mind no longer worked well or if it didn’t work at all? What kind of condition or suffering would you be willing to endure?”

Why is this type of question important? You’re the doctor; you know how to practice medicine. But what you don’t know is what would make for a “meaningful recovery” for this particular patient. Here’s what I encourage people to add to their advance directive. Their own “Meaningful Recovery Statement.”

Here is my “Meaningful Recovery Statement”:
“I value a full life more than a long life. If I have lost the ability to interact with others and have no reasonable chance of regaining this ability; or if my suffering is intense and irreversible, even though I have no terminal illness, I do not want to have my life prolonged. I would not then ask to be subjected to surgery or to resuscitation procedures, to intensive care services, or to other life-prolonging measures, including the administration of antibiotics, blood products or artificial nutrition and hydration. I also believe that the financial and emotional burden on my family should be considered in making these types of decisions.”

Because I have written this in my advance directive, my doctors will know what is important to me. Have your patients write one that is meaningful to them and attach it to or write it on their advance directive.

One more thing, please address the issue of terminal vs. non-terminal situations with your patients. It is not so much the dying that is the problem but the long term lingering, in a terrible condition that many people find reprehensible.

If you would like my special report on “An Insider’s Guide to Filling out the Advance Directive” and other special reports in the future, sign up for my newsletter and once a month I will send you inside information.

AB 2747 – End-of-Life Obligations and Communication

There are two parts to this California legislation. The first part addresses your obligations when your values limit what valid medical options you are willing to offer. The second part addresses when and how you should communicate about end-of-life choices.

The bill states that some patients and families suffer from a bad death since some physicians will not offer valid medical options. For example: If you your morals/values will not allow you to withdraw support or to write a DNR, then you are allowed to not participate in procedures you are morally opposed to. But according to AB 2747, you are not allowed to impose your values on the patient by not telling the patient about the other medical options. The law states that:

If a health care provider does not wish to comply with his or her patient’s request for information on end-of-life options, the health care provider shall do both of the following:
(a) Refer or transfer a patient to another health care provider that shall provide the requested information.
(b) Provide the patient with information on procedures to transfer to another health care provider that shall provide the requested information.

This has been the ethical standard for many years, but now it is the law. If you don’t want to talk about end-of-life issues, then by law, you must help the patient transfer to another doctor.

This brings me to the second part of the law. When a health care provider makes a diagnosis that a patient has a terminal illness or has less than one year to live, the health care provider shall, upon the patient’s request, provide the patient with comprehensive information and counseling regarding legal end-of-life care options. If the patient indicates a desire to receive the information and counseling, the comprehensive information shall include, but not be limited to, the following:

(1) Hospice care at home or in a health care setting.
(2) A prognosis with and without the continuation of disease-targeted treatment
(3) The patient’s right to refusal of or withdrawal from life-sustaining treatment.
(4) The patient’s right to continue to pursue disease-targeted treatment, with or without concurrent palliative care.
(5) The patient’s right to comprehensive pain and symptom management at the end of life, including, but not limited to, adequate pain medication, treatment of nausea, palliative chemotherapy, relief of shortness of breath and fatigue, and other clinical treatments useful when a patient is actively dying
(6) The patient’s right to give individual health care instruction pursuant to Section 4670 of the Probate Code, which provides the means by which a patient may provide written health care instruction, such as an advance health care directive, and the patient’s right to appoint a legally recognized health care decision maker.

It has always been ethically appropriate to have meaningful end-of-life conversations which discuss all the valid medical options including the option of having a good death. But now it is the law. You must have these conversations and offer all of the above options.

Why bother, the patient is going to die anyway?

Dear Viki,

I am a physician and need your advice. We had a recent case involving a middle-aged man who had terrible heart attack and was going to die soon. The family wanted us to keep trying and one of the other doctors said, “Why bother, the patient is going to die anyway.” I wasn’t sure what we should do. Should we keep trying to prolong the man’s life even though all we could do is to give him a few more weeks? Is it worth it?

This is a heartbreaking question. The first rule in bioethics is that we should always try to do what the patient has asked us to do. If he wanted us to keep going, even though it was for only a few more weeks, then that is what we should do. If he didn’t want to prolong his dying, then we should allow him to have a peaceful death. You didn’t tell me if he had made his wishes clear so I can’t give you a specific answer.

The next rule that doctors need to follow is that you are only obligated to provide appropriate, beneficial treatments. If you, as a doctor, know that _____ treatment won’t work, you don’t have to offer it. You don’t have to provide inappropriate and ineffective medicine no matter how hard the patient’s family begs for it. Patients have the right to refuse any treatment but they do not have the right to demand inappropriate treatments. You get to exercise your good medical judgment.

Here is where the real ethical conflict is in this case. Since you could keep him alive for a few more weeks, then the issue was not whether or not it was possible medically, but whether or not it was the “right” thing to do for this particular patient. Did keeping him alive provide him with the quality of life that he would want? To answer the question, “Is it worth it?”, we would have to ask the patient and if he wasn’t able to tell us, then we would need to ask his loved ones what he would say. For some people, lingering for a few weeks would only prolong their pain and suffering. For others, there may be tremendous meaning in those last weeks.

I think that as healthcare professionals, we sometimes forget that a few more days may mean the world to everyone involved. Whether it gives people time to travel to say their goodbyes or to make peace with the impending death, it matters. This case reminds me that we have to ask people what they would want so we will know how to care for them when their time comes. Ultimately, this comes down to respecting our patients while we practice good medicine.

When you are in trouble, the hospital’s bioethics committee can help.

Every hospital has a bioethics committee. It usually includes doctors, nurses, social workers, chaplains, community members and other people interested in medical ethics. It is supposed to help patients and families as well as healthcare professionals with difficult situations. When a conflict occurs and people can’t figure out what the right thing to do is, the bioethics committee should be able to help.

In most hospitals, you just call the hospital operator and ask to speak with someone from the bioethics committee. They will page the person on call and the bioethics committee member should call you back within two hours. Then you can tell them what the problem is and what kind of help you need. If that doesn’t work, call the Medical Staff Office at the hospital and ask to speak to the Chair of the Bioethics Committee.

A colleague of mine said she recently called because her family was at war regarding what to do for their grandfather. When she called for help, she was told that only doctors could call for these services. This is not true. Do not let the operator or other medical professional talk you out of contacting the ethics team.

What kinds of things can be taken to an ethics committee? Here are just a few examples.
If you are the patient and the doctor is not respecting your wishes, ask for help.
If you are the patient or family and you are having problems communicating with a difficult doctor and need help.
If you are the family member and your family is arguing about who should be in charge of making the decisions for your loved one.
If the doctor won’t return your calls or won’t talk to you and you need help.
If you are part of the healthcare team and you see something unethical or wrong.
If you are a person on the healthcare team and you can see that a conflict is starting and you think the people involved need help.
If you are the doctor and you think the family is prolonging the patient’s dying or suffering for personal gain, ask for bioethics help.
If you are the doctor and the patient or family is demanding treatments that are not medically appropriate.
If you are the doctor and you are having problems communicating with a difficult patient or family.

It is always better to ask for help sooner than later. Problems are more easily solved when they are dealt with right away.

I have to tell you the truth about one thing. Most hospitals have good bioethics committees but not every hospital has a well trained committee. If the committee isn’t able to help you enough, I would suggest working with the social worker assigned to the patient to find a better solution. If that doesn’t work, and the problem is with the doctor, fire that doctor and get a different doctor. Try not to make enemies along the way as you still need good care for your loved one. The healthcare team is responsible for the well being of the patient and you need to treat them respectfully as you ask for your concerns to be addressed. You may want to read my section on the KIND Method to get other ideas about problem solving in the healthcare setting.

Got a question?

When to ask the bioethics committee for help.

It is always better to ask for help sooner than later. I see this all the time. Healthcare professionals wait until the problem with the patient or family gets really bad and then they ask for help. But because they have waited so long, they have now created an adversarial relationship and the patient or family is entrenched in their demands. Medical and ethical problems are more easily solved when they are dealt with right away. I am sure you have said at some point, “If the patient had only come to me sooner, I could have saved them.” It is no different with ethical dilemmas. Get help early by working with the social worker on the case, ask the chaplain for help in dealing with the demanding family and call in your hospital’s bioethics committee.

What kinds of things can be taken to an ethics committee? Here are just a few examples.

? Code status
? Capacity
? Evaluating who is the right decision maker
? Poor prognosis
? Goals of treatment
? Advance Directive
? End-of-Life
? Beginning-of-Life
? Futile treatment
? Guardian involved
? Psychological/Spiritual Crisis
? Conflict between any combination of the staff, family or patient
? Breakdown in communication
? Moral distress of healthcare professional being asked to do something they are uncomfortable doing
? Medical errors
? Family prolonging the death for personal gain

I have to tell you the truth about one thing. Most hospitals have good bioethics committees but not every hospital has a well trained committee. If your hospital’s bioethics committee isn’t helping you, then tell the administration that you expect improvements to be made. A good bioethics committee can not only help resolve ethical dilemmas, but they can also minimize lawsuits and keep the hospital off the front page of the newspaper. If you would like more information about problem solving, you may want to read my section on the KIND Method to get other ideas. Please contact me if I can be of help to your hospital.

Implementing California’s new “POLST LAW”

1. POLST stands for Physician’s Orders for Life Sustaining Treatment. This form should be used to document the end-of-life conversation you have with the patient or their representative. This form should be used with those who with a terminal illness or approximately 1 year of life remaining.
2. If you are unsure if someone is within one year of death, ask yourself, “Would I be surprised if this patient wasn’t alive a year from now?” If the answer is no, I wouldn’t be surprised, then start having end-of-life conversations and use the POLST form.
3. POLST does not replace the advance directive. Instead, it supplements it by taking the requests of the patient, with physician approval, and puts the requests in action. An Advance Directive is still needed to document who should be the surrogate decision maker, other medical treatment requests or refusals and patient wishes regarding organ donation and/or autopsy.
3. It can be used in the ambulance, hospital, nursing home, board and care and patient’s home. Because it works across healthcare settings, there is clear communication regarding the patient’s wishes and continuity of care.
4. It replaces the Pre-hospital DNR in outpatient settings. It addresses more than a DNR. It also addresses: comfort care orders, level of treatment desired, whether to transfer patient to the hospital, antibiotics and artificial nutrition and hydration.
6. It must be signed by the physician and the patient or their representative. If the representative is out of town, you will need to fax the form to them and have them sign it.
7. Most importantly, by law, if you are presented with a completed POLST form, you MUST FOLLOW IT.
8. The only exception is when the request on the form is requesting medical care that is outside the standard of practice and would be medically inappropriate or non-beneficial. If you are going to reject what is written on the form as a request for bad medicine, you may want to protect yourself as you are going against the POLST law. You should discuss this with the bioethics committee or the legal department of the hospital.
9. You don’t have to use this form if you don’t think filling it out would be appropriate for your patient. But again, you do have to follow it if the patient presents it to you.
10. A patient or their representative can change their mind and void the POLST form. You should draw a line through the form and write VOID on it. If the patient has lost capacity, the surrogate decision maker can void this form. Do not take this decision lightly. The patient voiced strong opinions about their choices, their doctor agreed with their choices and the wishes were documented into physician orders. Be cautious when evaluating whether the surrogate is expressing the wishes of the patient or their own wishes.
10. When you are going to use the form, it must be printed on bright pink paper. The bright pink form is then given to the patient to take home or back to the nursing home with them. You should keep a white copy in your chart. You should also make sure the document is forwarded to the patients other healthcare providers and a copy should go in the hospital chart. You may also want to have the patient put a note in their wallet saying that they have a POLST form and where it can be found.
11. The patient should keep their pink form either on their refrigerator, in their medicine cabinet or at their bedside. The best place is on the refrigerator so the EMT’s can find it.
12. If a patient has a POLST form and an Advance Directive that requests different treatments, the most current form should be followed.
13. This form is to be used, not only to refuse treatments, but to request treatments as well. When talking to the patient about their wishes, instead of saying, “Do you want us to do everything?” please ask, “Would you want us to do what is medically effective?” This will help the patient realize that there is a difference between everything and valid medical options. You should also ask about where they would want to die and how they would want to die. You can ask, “Would you want us to allow you to have a natural death?” AND or Allow Natural Death is the new language to use when talking about DNR’s.
14. For more information on POLST go to FinalChoices.org. You can also download the POLST form at http://finalchoices.org/docs/CA%20POLST%20Form%202009.pdf Final Choices also has a brochure you can download to give to your patients.
15. Lastly, when you are ordering comfort care measures in the home or nursing facility, realize that there may become a time when the comfort of the patient can not be handled in the outpatient setting. If you do need to transfer the patient back to hospital, only treat the uncontrolled symptoms, do not admit the patient into the ICU or increase their level care in order to “cure” them. The goals of care haven’t changed, just the location.

Got a question? Ask Viki.

Why Did the Doctor Run Away?

Dear Viki,

“The doctor stopped coming into my grandpa’s hospital room and never came back to check on him. Luckily the nurse was there and helped our family as we didn’t know what to do. Viki, why did my grandpa’s doctor run away when my grandpa was dying?”

Maybe the doctor didn’t really “run”, but to the family, it felt like the doctor ran away and became invisible as the end approached. I don’t think doctors mean to do this, but unfortunately, doctors can be uncomfortable around death.

I know, you’re saying, “How can that be?” Well, it is easy. Those who are drawn to medicine and want to become a doctor are those who want to heal and to save. Nobody becomes a doctor to help people die. But unfortunately patients do die and doctors would rather not be a part of it. Unless they get specialized training, their discomfort with death doesn’t go away. Luckily, the young doctors coming out of medical school are getting better training regarding taking care of the dying.

Thank goodness for the nurses who take such good care of our loved ones as they die. Sometimes the best we can do for our loved ones is to have a good nurse, a good chaplain and a good social worker to make the experience a little better. Over the next few months, I will be discussing the concept of a “good death” in greater detail.

Feel free to contact me with your death and dying questions.

Why Won’t the Patient/Family Sign the DNR?

A couple of things may be going wrong. The first thing that happens is that the patient doesn’t understand the success rate of CPR.

On the television show “ER”, the patient not only survives CPR about 80% of the time but they also wake up with no negative consequences from the resuscitative efforts. We need to educate them that CPR works about 15-20% of the time on healthy people and less than 1% of the time for those with multi-system organ failure or metastatic cancer. We need to tell them that they may wake up in a worse condition than before and we need to tell them when it may only prolong their suffering and dying.

The second thing that goes wrong is that we limit our discussion to CPR. The CPR question should be one of many significant questions we ask during a meaningful end of life conversation. We need to ask them about how and where they would like to die.

Ask them, “How can I respect you and help you as you die?” We need to tell them that they have the choice of having a stranger straddling them doing compressions while their family waits outside the door or a peaceful death surrounded by their loved ones? I have never met a doctor who said they would choose the lonely CPR death, so why would you think your patients would want this?

The other thing most people want is to die at home but 53% die in hospitals and 24% in nursing homes. Please send people back home with hospice support.

One other thing you might try is you may want to begin using the term “AND” or Allow Natural Death when you talk about DNR. It is much easier to talk about what they would be allowing versus what you would be taking away from them. Just changing this language changes the discussion. This language also helps when you are talking to people from other cultures. It is difficult for families to choose to “give up” when what you are really offering is a good death.

No matter what, patients and families need us to talk about these scary and difficult subjects. We have to have courage to walk with them as they journey toward death.

Got a question? Ask Viki.

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