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.

Unethical behavior on Grey’s Anatomy

This won’t be the first or last time I will need to comment on unethical behavior on medical shows.

I am never surprised to see unethical medical behavior on television but I worry that the general public will think that this is how medicine is done.

Grey’s Anatomy had an episode last week in which one doctor went to speak to a patient’s loved one about donating their organs to a young boy who was dying. That would never happen in a non-TV hospital because doctors are not allowed to speak to the family about organ donation.

The only person who should be talking to the family is the representative from the local organ procurement agency. This protects doctors from having a conflict of interest by having to be both the person who is trying to save the patient and the person trying to take the organs after the death.

Another unethical thing that happened was what occurred after the doctor asked the wife for her husband’s organs and the wife said “no”.

Since other organs weren’t available for the dying boy, the doctor went back and put more pressure on the wife. This wouldn’t happen either. In medicine, we are supposed to respect people’s decisions, especially when they say no. Organ donation can not be a coercive process. You can ask, but you can’t push or force people to decide to donate their organs.

To make sure your family isn’t put in this situation without knowing your wishes, make sure you tell people what you would want in that situation. If you want to donate your organs after your death, then register your wishes with your local department of motor vehicles either online or in person. If you don’t want to donate, then you should write that down in your advance healthcare directive.

I believe in organ donation because organ donation saves lives. Maybe someday it will save yours.

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.

The Unbefriended Senior

What is an “Unbefriended Senior? The “unbefriended” is a word used to describe someone who doesn’t have any friends or loved ones in their lives that the doctor can talk to when the patient is sick or injured. This term could also apply to someone younger without any family or friends.

Let me tell you about what just happened. An 80 year old woman collapsed at the market and was brought to the emergency room. She has had a massive stroke and may not live. The social worker looks through the patient’s wallet to find her insurance card and any information about who to contact in case of an emergency. Only the insurance card and an address are found. The social worker begins to make calls, goes to the patient’s house and tries to find anyone who might know this person. But nobody is found.

So what can the doctors do? If the patient gets better, then the patient will be able to speak for herself but if she doesn’t wake back up then the doctors will have to apply the “Best Interest Standard.” What is this? The Best Interest Standard is used when the healthcare team doesn’t know what the person would want and when nobody is available to talk to.

The healthcare team and possibly the bioethics committee will meet to evaluate what medical options are available for this patient. This way it is not just one person making the decision but a moral community. Next, there will be a discussion about the benefits and burdens of each of the options. Then they will do the best they can to decide what should be done. They may have to make the difficult decisions about dying and death for this person.

The other option for the healthcare team is to have the court assign a public or private conservator or guardian for them. This court appointed person will make their medical and/or financial decisions for the patient. But of course, they don’t know anything about this person either so the choice they will make might be wrong.

My question for you is, “Would you want a stranger to be making life and death decisions for you?”

If the answer is no, then please tell your doctor who they should talk to if you are injured, write it down in your wallet and fill out your Advance Directive. I don’t want you to ever be the unbefriended patient.

Got a question? Ask Viki.

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.

How Do You Want to Die?

Your doctor comes into the exam room or your hospital room and asks you, “Do you want us to do CPR?” (CPR meaning cardiopulmonary resuscitation or bringing you back to life after you have died or as some doctors brutally put it, “pounding on your chest.”) What would your answer be?

I’ve asked many groups of doctors, “How many of you would like to die by CPR?” And no doctor ever, ever raises their hand. What is it that they know that they’re not telling us? They know that the chance of CPR working is minimal, sometimes even 0%. But they don’t tell you this. They don’t tell you that it’s not like on the television show ER. On ER, CPR works about 80% of the time. In real life, if you’re healthy, CPR works about 15 to 20% of the time. And if you are close to death, CPR works less than 1% of the time and will prolong your suffering.

Now just to be clear, CPR does work well if you’re a fairly healthy person having a sudden heart attack. To illustrate this point, one hospital told me that it would be best if CPR was only done on visitors who dropped dead from a heart attack. Of course that was said as a joke, but the people in the hospital understood that there was some truth in it.

The other thing they don’t tell you is that it can be brutal. You may be brought back to life but in a worse condition than before both mentally and physically. Or that you and your family won’t have the opportunity for a peaceful and profound death experience. When you picture the last minutes of your life, do you see strangers straddling you on a bed, thumping on your chest, all alone, while your family waits outside the door? Or do you see a time with family and friends gathered around the bedside, perhaps with music being played or prayers being said or words of love being expressed?

I don’t know about you but I know what I want. I want a peaceful and dignified death.

A profound death is the choice you’re not being offered because the doctor is not asking you enough questions. Okay, they should ask you about CPR, just in case you’re one of the few lucky ones that will benefit, but there is more to be asked. They should also ask, “How can I respect you and help you as you die?”

But doctors don’t ask this. Why? Because they are afraid of death, because they care too much about you and they don’t want you to die, and because they don’t want to fail. I can understand that doctors have good reasons for not talking about death. Good reasons because they’re good people with caring hearts. But these reasons can get away in the way of us having the opportunity to determine how we want to die.

So what can we do? When the doctor says, “Would you want CPR?” give him your answer and then tell him that there are other things he should know about where and how you would want to die too. Now some doctors won’t even ask you the CPR question because they want to avoid the topic so you are going to have to begin the conversation. You’re going to have to teach the doctor to be brave and to be willing to talk with you. You’re going to have to ask for clear answers and for the support you need. And if you find your doctor won’t talk to you, find a different doctor who will. And if after talking with your doctor, you realize they don’t respect or support your choices, find a different doctor who will.

You deserve a good death.

Got a question? Ask Viki.

I Am in Pain, What Can I Do?

One of my hospice patients just called and said that his pain is at a 7 and he doesn’t know what to do. He saw his doctor and the doctor didn’t take care of his pain and said, “See you in two days.”

Are you kidding me? I would like to see this doctor stay at a pain level of 7 for 48 hours. The doctor wouldn’t put up with this if he was suffering and would make sure his own doctor took care of him. But he ignored my patient. When I hear about his happening, it makes me so angry.

Now I know, you must be thinking, “How can this be?” Well this happens a lot for many reasons. Let me tell you a few so you can know how to fix it.

1. The patient doesn’t speak up enough about the pain. If you don’t tell the doctor, how can he help you? If this is you or your loved one, do not leave the office until there is a new plan in place. And the plan should include a time limit for it to start working. If the new pain medicine hasn’t gotten your pain under control within a few doses, then you should call and tell the doctor and then he should adjust the plan.

2. The doctor doesn’t know how to take care of pain symptoms. Okay, now you are really surprised to think of a doctor that doesn’t know how to take care of pain. Well again, this happens all of the time. Most doctors can handle basic pain management but many are uncomfortable when they have to deal with the increasing pain that happens with cancer or other progressive diseases.

3. Maybe you are from a culture where you are encouraged to be brave and stoic about your pain. Now the doctor will end up misunderstanding about your pain and you won’t get the care you need. The doctor will ask you, “How is your pain on a scale of 1-10” or he will use the happy face chart. This works fine if you tell the truth about how much you are hurting but not if you don’t. So speak up and admit you are in pain.

4. Finally, and this will sound harsh but there are some doctors that don’t seem to care. If so, immediately get a new doctor. You should not go through your life in terrible pain and especially if you are dying. You should not have your final days be in pain. If you are dying and your pain is not being taken care of, then ask your doctor to put you on hospice. Hospice doctors and nurses are really good at taking care of pain and suffering.

Got a question? Ask Viki.

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