Your Patient’s Just Not That Into You

Are you the difficult doctor? Are you making things better or worse for your patient and their family? You might be perceived as a difficult doctor if:

– The nurses hide when you come onto the floor

– You will not return phone calls

– You will not listen to the patient/family

– You appear too busy and in a hurry to demonstrate compassion

– You will not respect the patient’s wishes or the patient’s advance directive

– You will not transfer the patient to another doctor who would be a better fit

– You have a bias against the patient’s culture, religion, gender, sexual orientation, etc.

I had a doctor tell me that the nurses hide from him but he was sure he wasn’t the problem. I just smiled as he went on to defend his rude and aggressive behaviors. I tried to explain to him that how you treat a patient affects the medical outcome. Research has shown that if a patient trusts you, they will heal faster. And trust comes from good communication. I told him that I understood that he didn’t mean to be difficult and that he may just be misunderstood because he is so busy.

If your patients aren’t that into you, then here are some strategies to help your patients reconnect with you.

Here is the most important point: We want to turn judgment into compassion. When a person comes into your office, you don’t know what just happened in their life. They may be grumpy, angry, frustrated or sad because they are in the middle of a divorce, their brother just died or they just had a car accident. Whenever I see someone in a bad mood, I give them the benefit of the doubt. I try to be compassionate and give them extra support. Usually, just showing them some kindness turns the situation around and I become a trusted ally.

Other ways to rebuild the relationship:

1. Be aware of your negative expectations. If you walk in expecting the worst, you will get it.

2. Avoid making assumptions. Your assumptions may be wrong. There may be a good reason this patient is being difficult and if you can find out what it is, you can help resolve their issues.

3. Listen more so you can understand the patient’s perspective. Listening itself can be an act of healing. When you listen, the patient feels cared about.

4. When we deal with someone who is difficult, our frustration makes us pull away from them. What we really need to do is to monitor our emotions and reactions so we can continue to be empathetic and compassionate.

5. If the patient continues to be non-compliant, work on maintaining the relationship through an ongoing dialogue. If the patient can rebuild their trust in you over time, they may begin to take your advice. You have the power to change it from a conflicted relationship into a collaborative one.

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 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.

Helping the Family Make the Difficult Decisions

Doctors tell me all the time that they struggle with families that aren’t respecting the patient’s wishes or are not making wise decisions for their loved ones. Over the next months, I will give you many techniques you can use in these situations. Here are two to help you begin.

A dear friend of mine was sitting at the bedside of his wife after her massive stroke. They had been married for over 50 years. As I sat with him he said to me, “The doctors keep asking me what I want them to do. Well, what I want is for them to keep Ruth alive no matter what.” I nodded and listened as he continued. “If they asked me what Ruth would want, she would say, “Let me go, I don’t want to live like this. But the doctors don’t ask me what she wants, just what I want.” I was so surprised that in his grief he understood the difference.

So here are two techniques you can begin to use to improve end of life decision conversations. First, stop asking, “What do you want us to do?” And instead ask, “What would (the patient’s name) want us to? What would (the patient’s name) be telling us to do in this situation?” And if the family member responds, “What I want is …” you stop them and re-clarify that they are supposed to speak as if they are patient. You can always use the classic question, “If the patient was able to wake up for 5 minutes and understand what was going on, what would the patient say?” The trick is to keep silent after the question and let the family member struggle with the question. The silence in the room helps the person understand the significance and the weight of the question. Don’t rush them as they haven’t been thinking about what the patient would want; only what they would want.

Secondly, you need to educate the family about their role as the decision maker early on. Explain to them that they are supposed to make the decisions based on the patient’s values, not what they would want. Tell them that they are supposed to speak with the patient’s voice and wishes, even if it’s hard to do. I think we need to acknowledge how difficult this job is for the family member and to validate their struggles. “I know this must be very difficult for you, but it is important that we respect your loved one and follow their wishes.” If we can begin the conversation with the right questions and to educate families regarding their role, it will provide a good beginning to improving end of life communication. More to come on this topic later.

Family as Stakeholder

I had an interesting discussion the other day about what to call the family when they are involved in the patient’s care. Do we call them simply family? Or caregiver? Or stakeholder?

Each of these terms comes with assumptions about the family’s role in the healthcare setting.

If you are a caregiver, you are changing someone’s diapers and helping push their wheelchair. If you are the family, then I would ask, “Are you there to help or are you going to make things worse because of the conflicts already within your family?”

I like the term, family as stakeholder because as a stakeholder you get a voice.

You have a stake in what is happening to your loved one. You have to take off work to go with the patient to their doctor’s appointments. When the patient is discharged from the hospital, you are responsible for their care. When the patient can’t pay their bills, you may feel responsible, even though you aren’t really responsible. While the doctors and nurses may grieve when the patient dies, it is your own deeper pain and loss you will have to deal with. Even though you aren’t the patient, you experience the effects of the situation.

Now, if you are from a culture where the family is more important than the individual, then your family may make it difficult for the healthcare team because the “family as decision maker” isn’t how healthcare works. Healthcare is based on autonomy which means the patient is in charge of making the decisions about their body. Now I am a big fan of autonomy because it is the patient’s body which will feel the effects of the medications, the pain of the surgery and the long term suffering associated with their disease. As the family, we only witness what they are going through. But as much as I love autonomy, I understand how hard it is to be the family and see your loved one in pain, afraid or maybe dying.

The pediatric physicians get this. Pediatricians practice “Family Centered Medicine.” What does this mean? It means they take into account how the patient’s situation is affecting the entire family. The patient is still the primary person that they focus on but they don’t ignore that the family has a role in whether or not the child will get better. But this isn’t how it works in adult medicine. It is only about the patient.

So what can you do if you want a voice? Be cooperative and respectful when you are dealing with the doctors and nurses. Say please and thank you when people help your loved one. Pay attention to what the doctor is saying because the patient may be too sick to listen. And when you see something that is going wrong, don’t threaten to sue but instead bring it to everyone’s attention and ask, “How can we solve this problem together.” You don’t want to become the enemy. You want to be a part of the team.

I had an interesting discussion the other day about what to call the family when they are involved in the patient’s care. Do we call them simply family? Or caregiver? Or stakeholder? Each of these terms comes with assumptions about the family’s role in the healthcare setting. If you are a caregiver, you are changing someone’s diapers and helping push their wheelchair. If you are the family, then I would ask, “Are you there to help or are you going to make things worse because of the conflicts already within your family?”

I like the term, family as stakeholder because as a stakeholder you get a voice. You have a stake in what is happening to your loved one. You have to take off work to go with the patient to their doctor’s appointments. When the patient is discharged from the hospital, you are responsible for their care. When the patient can’t pay their bills, you may feel responsible, even though you aren’t really responsible. While the doctors and nurses may grieve when the patient dies, it is your own deeper pain and loss you will have to deal with. Even though you aren’t the patient, you experience the effects of the situation.

Now, if you are from a culture where the family is more important than the individual, then your family may make it difficult for the healthcare team because the “family as decision maker” isn’t how healthcare works. Healthcare is based on autonomy which means the patient is in charge of making the decisions about their body. Now I am a big fan of autonomy because it is the patient’s body which will feel the effects of the medications, the pain of the surgery and the long term suffering associated with their disease. As the family, we only witness what they are going through. But as much as I love autonomy, I understand how hard it is to be the family and see your loved one in pain, afraid or maybe dying.

The pediatric physicians get this. Pediatricians practice “Family Centered Medicine.” What does this mean? It means they take into account how the patient’s situation is affecting the entire family. The patient is still the primary person that they focus on but they don’t ignore that the family has a role in whether or not the child will get better. But this isn’t how it works in adult medicine. It is only about the patient.

So what can you do if you want a voice? Be cooperative and respectful when you are dealing with the doctors and nurses. Say please and thank you when people help your loved one. Pay attention to what the doctor is saying because the patient may be too sick to listen. And when you see something that is going wrong, don’t threaten to sue but instead bring it to everyone’s attention and ask, “How can we solve this problem together.” You don’t want to become the enemy. You want to be a part of the team.

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