Caregiver Burnout – Saving the “Other” Patient

Your patient is not the only one who is suffering. Their caregiver is suffering too. And soon, you may have another patient on your hands. You have probably not been the primary caregiver yourself since have been busy helping other people’s families. But I can tell you from personal experience that caregiving can become so overwhelming that I could barely get up and function. There is a profound sense of isolation, fatigue and helplessness that destroys the caregiver. I am an extremely capable and competent person, and if can fall apart due to caregiver stress, then anyone can.

Signs of caregiver stress and burnout:

• Caregiver burnout is a state of physical, emotional and mental exhaustion

• Fatigue, stress, anxiety, and depression

• Accompanied by a change in attitude – from positive and caring to negative and unconcerned If the loved one who is usually supportive and interactive during the patient’s appointment becomes withdrawn and passive, you may have a person in crisis in front of you.

Why do caregivers burnout?

• Don’t get the help they need, or if they are doing more than they are able, physically or financially

• May become ill themselves

• May feel guilty if they spend time on themselves

• May have to quit job to stay home

• May go bankrupt, both financially and emotionally

If you let the caregiver crash, then the patient is at risk. They both need your help.

What can you do?

1. You can order home health support to get them through this crisis. You can order a visiting nurse, medical equipment or someone to go out and evaluate the situation.

2. Many insurance companies now have patient support systems in place. Find out what is available and have the numbers ready to give to your patients.

3. Create a local resource handout that you can give to your patients. The social worker at your hospital already knows what resources are available in your town and can give you a list of people the family can call. This can also include resources for patients to get discounted drugs from the pharmaceutical companies.

4. There are also free organizations you can recommend in most communities such as meals on wheels, dial a ride and volunteers with groups such as the American Cancer Society.

Did you know that if you put a patient who has been married for a long time on hospice, their spouse is less likely to die within a year of the patient’s death? You truly have the power to heal and save more people than you realize. Take the time to reach out and provide the support people need.

Have a kind and respectful day.

Got a question?  Ask Viki.  <!–coldform–>

The Good News And The Bad News About Hospice

The good news is that I was just in Scottsbluff, Nebraska and their hospice program is doing such a great job of providing people with the option of a good death that 46% of their dying patients are dying with the help of hospice. Amazing. Nationwide the average is 33%-38% with some states as low as 14%. I am even more impressed with what is happening in Nebraska since they are covering 9000 square miles. I know local hospices in Los Angeles that are struggling to cover their few hundred square miles. Usually those who live in rural communities are limited by the minimal medical services that are available. Nebraska has found a way to move beyond those limitations and to get people what they need. I congratulate the hospice workers of Nebraska.

The bad news is that not every hospice is the same. I was told about a hospice in another state that was providing terrible care. They weren’t using universal precautions to prevent infections from spreading to other family members, were putting the patient at risk when transferring the disabled patient and were not calling the family back when they called to complain. Like any industry, there are good and bad hospices and good and bad employees. If you are on hospice and you don’t think you are getting the care you need or they are not being respectful and responsive, change hospice providers. The bad hospice I just mentioned tells people that they can’t change their hospice provider for 90 days. That is a lie. You can change any healthcare provider any day. You are never locked in.

There are many types of hospices. There are inpatient hospices which are part of hospitals, inpatient hospices that are in their own building, for profit hospices, not for profit hospices and volunteer hospices. Any of these can provide good, loving care and most do everyday. It is not the type of hospice but the people running it and working in it that makes the difference.

Should a doctor treat their own family members?

Dear Viki,

What is your take on doctors who take care of patients with whom they have a personal relationship including families and how should hospitals deal with this?

Thanks for asking this question. This is an ethical problem that is regularly ignored and has always bothered me. The quick answer is that doctors shouldn’t treat loved ones unless it is an emergency and no other doctor is available or if the patient is in an isolated place and no other doctor is nearby. This would never be the case in a hospital setting where another doctor is readily available. Hospitals should have a policy against this behavior.  This may be more difficult to deal with in rural communities but every effort should be taken to protect the patient.

I have heard doctors tell me that they can be objective. They may think that they are able to be objective, and maybe one or two can, but they can’t change what the patient is experiencing. Patients may not be willing to tell the whole truth to their family member, may be embarrassed to be examined by the family member and may feel pressured to do what the doctor/family member says even though they disagree with the plan. And it doesn’t have to be only with family members. It can also be a problem with friends who are healthcare providers. Doctors should hold themselves to the higher standard and live by their own professional code of ethics.

Here is what the American Medical Association has to say about it in the physician’s Code of Medical Ethics:

E-8.19 Self-Treatment or Treatment of Immediate Family Members

Physicians generally should not treat themselves or members of their immediate families. Professional objectivity may be compromised when an immediate family member or the physician is the patient; the physician’s personal feelings may unduly influence his or her professional medical judgment, thereby interfering with the care being delivered. Physicians may fail to probe sensitive areas when taking the medical history or may fail to perform intimate parts of the physical examination. Similarly, patients may feel uncomfortable disclosing sensitive information or undergoing an intimate examination when the physician is an immediate family member. This discomfort is particularly the case when the patient is a minor child, and sensitive or intimate care should especially be avoided for such patients. When treating themselves or immediate family members, physicians may be inclined to treat problems that are beyond their expertise or training. If tensions develop in a physician’s professional relationship with a family member, perhaps as a result of a negative medical outcome, such difficulties may be carried over into the family member’s personal relationship with the physician.

Concerns regarding patient autonomy and informed consent are also relevant when physicians attempt to treat members of their immediate family. Family members may be reluctant to state their preference for another physician or decline a recommendation for fear of offending the physician. In particular, minor children will generally not feel free to refuse care from their parents. Likewise, physicians may feel obligated to provide care to immediate family members even if they feel uncomfortable providing care.

It would not always be inappropriate to undertake self-treatment or treatment of immediate family members. In emergency settings or isolated settings where there is no other qualified physician available, physicians should not hesitate to treat themselves or family members until another physician becomes available. In addition, while physicians should not serve as a primary or regular care provider for immediate family members, there are situations in which routine care is acceptable for short-term, minor problems.

Except in emergencies, it is not appropriate for physicians to write prescriptions for controlled substances for themselves or immediate family members. (I, II, IV) Issued June 1993.

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.

Your Doctor’s Just Not That Into You

Do you get the sense that the doctor doesn’t seem to care about you? Does the doctor seem rushed? Are they not listening to your concerns? Do they not return your phone calls? If so, you may have a difficult doctor as your doctor.

The reality is that all doctors are rushed now. Doctors have a lot of financial pressures as the insurance companies pay them less and less every year. I know doctors that can barely pay their bills but they love medicine so they keep practicing. So, if it is just that you don’t get enough time, that might happen with any doctor.

But if it is more than that, you may have a doctor who is judgmental and won’t give you enough care. Research has shown that if a doctor doesn’t like a patient, they will spend less time with the patient. They might not like you because you are overweight, from a different religion, from a different culture, or you aren’t following their advice. Doctors get frustrated when patients won’t listen to them. You come to them for help and then you don’t take the medicine, go get your x-rays done, stop smoking, eat healthy, etc. Doctors shouldn’t get frustrated but they are human. They want you to get better and when you become a non-compliant, problem patient, then they treat you as a problem. I am not saying this is right, but this is what happens.

Your goal is to have a good working relationship with your healthcare team. And it is up to you to be a good team member too. You don’t have to agree with everything the doctor says, but you should be respectful and at least consider what the doctor is saying.

So what can you do if you have a bad relationship with your doctor? If you truly don’t like your doctor or think the doctor is the wrong doctor for you, then you should change doctors. You are allowed to fire a doctor at any time. Don’t let them tell you differently. Your insurance has to provide you other options. How do you fire a doctor? You can just tell them or you can write a letter. The doctor is obligated to give you a copy of your medical records and they are allowed to charge you a reasonable fee for this. Even if you are in the hospital, you can still fire your doctor.

One more thing to consider. Doctors are real people too. They have personal problems just like all of us. So if they are just a problem at one visit, then maybe they have just had a death in the family or are dealing with a problem teenager. Give them the benefit of the doubt and understand that they are doing the best they can. If they continue to be distracted, disrespectful or uncaring, then change doctors right away.

Why did the doctor do CPR against the patient’s will?

Dear Viki,

I just got the call that my father-in-law was resuscitated (got CPR) twice even though he had a DO NOT resuscitate order in place. Instead of a being allowed to die, now he is in the ICU and receiving care he doesn’t want. What just happened? What do I do next?

Even though this isn’t supposed to ever happen, it happens at all hospitals. A DNR or a do not resuscitate order should be followed but sometimes because people are in a hurry or don’t check the chart or don’t agree with the order, and the person is brought back to life against their will. This is a terrible thing for the patient and family to go through, Instead of the patient getting to die a natural death, they receive medical care against their will.

Here is the truth about this situation. If the medical professionals knew that there was a DNR in place, then what they did to your father-in-law is called assault and battery. The people involved can be arrested and criminally charged. And I need to let any healthcare professionals that might be reading know that your malpractice insurance won’t cover this because it is a criminal offense.

But what can you do now that it has happened. The best thing to do is to talk to the nurse and find out if they realize they made a mistake. (Don’t be hostile or aggressive as these caregivers are still taking care of your father-in-law.) Be polite and make sure that there really is a DNR written on the chart and that they will make sure it is respected. Sometimes we think these instructions have been written but the doctor hasn’t gotten around to it or won’t write it. There are some physicians that are morally opposed to the DNR and are supposed to tell you that they won’t do it. But many times they won’t tell you or even let you know it is a valid medical option. If the doctor won’t write the DNR, then fire that doctor and get another doctor to write it immediately.

You may also want to notify the hospital administrator who is on call. Let them know what has happened and they can help you. The other person that can help you is the social worker. The social worker will know who to call and will help advocate for the patient.

Another note: I spoke with this person directly and found out that the family thought that the patient had a DNR but really only had an advance directive that said do not resuscitate. Those wishes were not transferred onto the chart. This is something we need to be careful about. Just because the patient may have refused a certain treatment, it doesn’t really count until it is known by someone on the healthcare team. Of course the patient’s wishes should always be respected, but these are serious orders about life and death and they must be written out by the doctor. (It still might be assault and battery if the patient’s wishes in the advance directive were known by the healthcare professionals.) Make sure you go over your loved one’s advance directive doctor when you arrive at the hospital.

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.

Getting the most out of this website/blog.

This blog is divided into two sections. The first section is my dual blog. What is a dual blog? Well, most blogs are written for one audience. But I designed this site to help two audiences, patients and their families and the healthcare professionals that are taking care of them. I will be writing about the same topic, side by side, from both perspectives. So if I am talking about organ donation, I will tell patients and families what they need to know about the organ donation process. And then I will write a sister blog piece which will help the healthcare professional understand what the patient and family will need from them during the organ donation process.

I believe that information is power so I encourage you to read what I have written for the other group. If you want to know what secrets I am telling doctors about working with patients, then read their section. If you want to know what I am doing to help patients be better patients and to help them get better care, then read their section.

The other main section I encourage you to read and to participate in is the “Ask Viki” section.

Who might need to contact me? Everyone and anyone.
If you have been to the doctor or are in the hospital and you have questions about how to get the care you need, write to me.
If you are a healthcare professional and you are dealing with difficult patients or situations, then ask me about it and I can help.
For anyone who has to deal with an aging parent or grandparent, I can help you.
And finally, if you are dealing with someone who is dying, or you’re dying, I can help.

Your questions will help me reach my goal of helping as many people as I can. I want things to be better for all of us.

5 Reasons We Will Never Have National Healthcare

Reason #1.
You, the patient, are offered three medical treatment choices:
Option #1 costs $10,000 and works very well with very few side effects.
Option #2 costs $1000 and will also work very well but will have a few more side effects.
Option #3 costs $300 but only works some of the time with lots of side effects.
Which will you choose?

Most people will say, “I don’t want a chance for more side effects or one that only works some of the time, I want the best, Option #1.” Or people might say, “Well it is okay for someone else to choose the 2nd or 3rd option, but I have a right to good healthcare.” And what they mean by “good” healthcare is really great healthcare. For national healthcare to work, we need people to be willing to accept and to choose the second best choice sometimes which may come with a few more side effects. The system can’t afford the best all of the time. To make this happen, we have to adjust the rules doctors live by which brings me to reason number two.

Reason #2.
Doctors must give informed consent which means people have to be given enough meaningful information so they can make a good decision regarding what treatment to choose. This information would include being told about the first, second and third best options. Who is going to say, “No, doctor, really it is fine with me. Give me second best option.” We are starting to see this problem for certain hospitals that statistically provide second rate care and therefore may eventually need to disclose to patients, “You may be better off going somewhere else.” So if doctors need to tell the whole truth, the system will break down. Informed consent will have to be limited to those treatments allowed under the national health plan.

Reason #3.
The other problem doctors will have is that they will still be held legally liable for providing good healthcare. If you don’t get better or you get extra side effects, you will sue the doctor. Why is this doctor’s fault when the system says he has to give you option #2 or #3? Our malpractice system will have to change to protect doctors who are only following the rules set up by the national healthcare system.

Reason #4.
National healthcare will mean a more equal distribution of medical resources. What that really means is that many of us will have to accept a little less for everyone else to receive a little more. Now, you may say you want this but how many people really act in an unselfish way? I know lots of people who say they care about the poor and underprivileged, but I don’t see them sending a poor family half of their paycheck. We want the government to take care of everyone while we still get everything we want. But we can’t get everything we want with national healthcare. It just isn’t possible. But, everyone could get reasonably good care.

So, we are part of the problem. We are selfish. Our selfishness is a deeply imbedded societal belief about what our obligations are to others. This country was built on individualism and watching out for your own best interest. We are not a country which cares more about others above ourselves. And those of you who just said in your mind, “Well I care.” Then do something significant to prove me wrong.

Reason #5.
The last reason things won’t change is that our politicians are not interested in voting for national healthcare. Right now they are receiving a substantial amount of money from insurance companies and pharmaceutical companies. Why would they want to stop getting all this money? They don’t. And you wouldn’t either if you were in their place. Politicians talk a good story but when it comes to action, nothing gets done. How many politicians said they are for national healthcare during their campaigns? Most, but still nothing will happen. It is about money.

But we, as individuals have power. If the politician gets voted out of office they will lose their financial kickbacks. So, we have to tell them that if they want to stay in office, they have to give us national healthcare. And if they don’t vote it in this time, we must vote them out of office. We are not helpless. If we truly care, and I hope we do, we need to speak up, speak out and vote responsibly. Contact all of your local and national politicians to vote for national healthcare. And contact them over and over again. They won’t take us seriously unless we get serious about caring for all Americans.

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