Are you treating your loved one like a “Third Party Patient”?

When you take your loved one to the doctor’s office, are you making sure that you are keeping the person with diminished capacity involved in the office visit? Too often, the doctor starts talking to the patient’s family or caregiver and forgets that the patient is in the room. Or sometimes we forget that our loved one is still here and begin to make all of their decisions for them. This is what is called, “Making the person a third party patient.” It is seems like the patient has become invisible.

I know this has happened in my family. Many times, my dad’s doctor would ask me in front of my dad, “How is your dad feeling today?” Then I would say, “I don’t know, ask him.” Or when I would take my aunt, who was in a wheelchair, out for lunch, people would say to me, “What would your aunt like to eat?” And once again I would say, “I don’t know, ask her.” We have to remind people that our loved one is still here. Even if the person has lost some of their ability to think and communicate, that doesn’t mean that he or she shouldn’t be included. Yes, the person with diminished capacity will not be making the final decisions about medical treatment choices, but the individual can still voice his or her opinion.

I know that it may not be easy and it may take more time, but we need to keep the person included. The person deserves our attention and our effort. Face the patient, ask the person questions and be patient when waiting for the answer. Explain to the person what will be happening to him or her in language that can be understood. It is important to include the person for as long as possible and when it is safe to have them have a voice in the decisions.

Have a kind and respectful day.

The Pajama Story

The Pajama Story

My friend, Gail, told me the most touching story the other day. A lovely lady was a devoted and loving wife to her dying husband. She did everything for him at home but as the end neared, she had to admit her husband to an inpatient hospice facility so he could get more help managing his symptoms. This ended up being the best thing for both of them. She told my friend, that because there were other people to take over the care of her husband, she was finally free to put on her pajamas, crawl into bed beside her husband and spend his last three days with him as his wife, not his caregiver. It was the first time in months that she could stop and reconnect with the love of her life.

I cried when I heard this. So often we get caught up in the caregiving that we forget that we are an important person in this individual’s life and that they are important to us. Our loved one is not a body to be turned or fed or cleaned, but the person we love.

No matter what stage you are in during the caregiving process, take a moment to remember the love when you are caregiving. You may not have forever, so do it today. Put on your pajama’s and remember why you have devoted yourself to this person. These are precious moments not to be wasted.

Have a kind and respectful day.

When your loved one said to do everything, but everything isn’t possible

Dear Viki,

My father said he wanted everything done but I can’t bear to watch his suffering. It seems like he keeps getting these terrible treatment, but nothing works. The doctor keeps asking me if I think it is time to put him on hospice but I promised my dad that I would make sure the doctor didn’t give up on him. My dad is the type of person who would never give in or give up. I feel like I am supposed to do what he says, but isn’t there ever a time when I should just say, “Enough”?

I am so sorry you are in this difficult position. It must be so difficult trying to balance doing the right thing for your dad with trying to respect his wishes. The first thing I would suggest is to make sure you get better pain management for your dad. He shouldn’t be suffering while he fights his disease. Ask for a referral to a palliative care doctor. This type of doctor can help you with the healing of your dad’s suffering and get the symptoms under control.

Secondly, what you are experiencing is moral distress. This is when you are doing the right thing but it feels so wrong. I would be suffering like you if I was in your situation. For some people, there is tremendous value in the fight to the end. Not giving up is more important than the hardships that are faced along the way. But this can put a tremendous burden on the person having to make the decisions and to witness the results of these choices. One of the most difficult situations is when the person asks us to advocate for things we don’t agree with. The thing you have to realize is that this is your dad’s life and health. This is how autonomy works. People have the right to make bad decisions. And you have to be brave enough to do right by your dad.

The answer to your question:

Here are your obligations. Since your dad told you that he wanted to fight to the end, then that is what you should try to do. But that doesn’t mean you have to keep choosing to do things that don’t work. If the treatments are only causing suffering and are not helping your dad, then you are not obligated to continue with that plan. You are supposed to fight for the medical options that will actually benefit him. Talk to the doctor and tell him it is time for a new plan for your father. Anytime a plan stops working, we have to face it and make a new plan. If there is nothing new that the doctor can offer, then that is when you can say enough. And now your work begins as you advocate to get him the best end of life care that you can. Change the “do everything” that you have been focused on during the fighting process into a “do everything” to fight for a pain-free and peaceful death. Don’t think of this as giving up, think of this as fighting for a new goal.

A healthcare insider’s look at the healthcare debate from a social point of view.

5 reasons we will never actually pass a national healthcare plan.

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.

For a look at the money issues in the healthcare debate, go to http://kindethics.com/2009/09/an-healthcare-insiders-look-at-the-healtcare-debate-from-a-money-point-of-view/

Have a kind and respectful day.

Nighttime Day Cares for People with Dementia and Alzheimers

In my recent interview with the author of Becoming Dead Right: A hospice volunteer in urban nursing homes, Frances Shani Parker told me about a new concept that is spreading across the nation. Nighttime Day Care Facilities for people with dementia and Alzheimers. Instead of giving the caregiver a break during the workday, the caregiver gets a good night sleep. This is exceptionally helpful because people with dementia tend to be up and night and want to be entertained. No wonder so many caregivers are exhausted if they are up all night taking care of their loved one. Not only is this a great idea for the caregiver, the person with dementia gets the interaction and attention they need. They feel less frustrated, less isolated and more content.

You can start out with one or two times a week and add more as necessary. There will be a period of adjustment but most people really enjoy getting out and spending time at these day or night cares. Frances also said that this can be a good option for people who will eventually need to go to a care facility full time. Going to day or night day care will help the person transition more easily when the time comes.

This is also good for business because now the day care can cater to a whole new group of customers. The night time crowd.

If you would like to listen to the interview about what we can do to improve nursing homes and the recent regulatory changes mandating these changes, click on http://tinyurl.com/lrjj8c. You can listen on line or download it through itunes.

Have a kind and respectful day.

A Good Death – You Tell Me and I Will Help You Get It

A good death is what you tell me it should be. No one can define what would make a good death for you. If you tell people what would be meaningful for you, then those around you can get you what you need. I have lots of ideas for things you might want to do to create a legacy for your family but that is only if that is what you want to. Perhaps you want to record your life history on an audio or a video tape. Perhaps you want to write love letters for your family to open after you are gone. Perhaps you want to write an “ethical will” outlining what values and beliefs you would like to pass on.

Or maybe you want me to know about how to handle your physical symptoms. Maybe suffering has meaning for you. If you explain this to me, I will understand when you don’t take your pain pills. Or if you tell me that you don’t want to suffer, I will understand when you take your pills and sleep a lot. Or perhaps you want to trade a little bit of pain control for consciousness, then I will understand if you only take a little of your pain meds. You tell me. It is your death.

Or perhaps you don’t want to talk about it and just spend your days living. You get to decide but you have to tell people so they will know what is important to you. Otherwise, we won’t know what to do to support you.

There is a famous bioethics case of a lady who needed to have her leg amputated. She didn’t want to have her leg cut off even though it meant she would die. The doctor argued with her again and again. He would ask, “Don’t you want to be alive to see your grandkids grow up? Don’t you want to spend time with them?” Finally the woman said to the doctor, “I hate my grandkids.” He was shocked. But she went on to explain that the only thing that brought her joy was working in her garden. And if her leg was cut off, then she couldn’t do that anymore. The doctor had thought that what would be valuable for him would be valuable for her. He was mistaken.

You have to tell your doctor what matters to you. And if you can, write it down so people will know what to do when it comes time. When it is written down, you are more likely to get what you want. A good death on your own terms.

Have a kind and respectful day.

When you hear the words, “There is nothing more we can do.”

As a patient, there may come a time where you hear the words, “I’m sorry, there’s nothing more we can do.” I want to apologize for the doctor’s abrupt words. Many doctors have had little training in having these types of conversations and are incredibly uncomfortable. What your doctor should really be saying is, “Even though there is nothing more we can do to cure you, there’s lots more I can do. I can do plenty to keep you or your loved one comfortable, out of pain, minimize your suffering, refer them to hospice, get your religious leader in here to pray and help provide a peaceful and dignified death.” Just because you don’t hear this doesn’t mean you shouldn’t ask for this. You should advocate that the doctor makes sure you get what you need as your disease progresses and as you die. Help the doctor help you by asking for a palliative care referral if you are having problems with pain. Ask for a referral to hospice when the patient is sleeping more and eating less. You want to stay connected to the doctor even if the direction of treatment has turned to comfort and care.

As a patient or a loved one, you will have a strong grief reaction to these words. You may be in denial, in disbelief, in numbness or feel some other strong emotions. If you are in denial, you will not believe that what you were just told is true. This is okay as it is the way your brain protects you from bad news. Eventually, you will hopefully come out of denial so you can use your remaining days wisely. Or you may find yourself in disbelief. Disbelief is where you keep saying to yourself, “I know the doctor just said ______ but I can’t believe it’s true.” In this situation, you may want 2nd opinions or repeated tests. This is disbelief. Your brain knows it’s true but it is not ready to accept this news. This is also okay and normal. Or you may be numb. This can really be a problem when the doctors want you to make decisions. Ask for a few days so you can process what you have been told before you make these final decisions. You may also have many other types of emotions: anger, fear, hopelessness, helplessness, sadness, etc. These are also normal as you come to terms with your life’s expiration date.

You get to choose how you want to spend your remaining days, months or years. Choose carefully as you won’t get these days back. And if you are like someone I knew who was waiting until they got closer to death to write love letters to his children and his wife, realize that sometimes when get closer to death, you may not have the energy or strength left to finish your goals. Please use your time wisely.

Have a kind and respectful day.

My dad would say that, “Dying is difficult because we have never done it before.” But we don’t need to be afraid because our bodies know how to die.

My dad would have told you that, “Dying is difficult because we have never done it before.” But we don’t need to be afraid because our bodies know how to die.

A few hours before my dad died, a couple of his friends stopped by to say their goodbyes. His friend Mary asked me, “What do you think your dad would be saying right now?” I said, “He would probably say that dying is difficult, because we haven’t done it before.” The reason I told her this was because he used to say the same thing about aging. “Getting older is difficult because we haven’t done it before.” How true both of these statements are because anything that is unknown to us can be scary. If we had done it before, we would know that it isn’t as bad as we thought it might be. We might realize that there can be profound lessons in aging and in dying. We might be at more peace during the dying process because we would know that our bodies know how to die. What do I mean by this? The act of dying is sometimes referred to as the labor of death. It is actually rather similar to the labor of birth, though hopefully a lot less painful. Let me explain.

When you were about to be born, your mother didn’t have to say to her uterus, “Please contract now and began to push the baby out.” Or, “Cervix, please dilate so the baby can come out.” Your mother’s body knew what to do and the labor of birth happened naturally. The labor of death is similar to the labor of birth because your body knows what to do. As you begin to near the end of your life you may begin to sleep more and to become less interested in the world around you. You may not have the strength to the things you used to do. As death gets nearer, you will begin to sleep even more and to eat even less. You’re just not hungry anymore and that is normal and all right. Your body knows that it’s time to shut down and that it doesn’t need extra food to keep it going.

Your body goes through predictable and peaceful changes as death approaches. Your skin will get cooler and your breathing patterns will change back and forth from fast to slow to barely there. You may get a fever. There are many other symptoms that you might also experience. You probably won’t be communicating at all at this point. But you can still hear and feel your family. Your loved ones should still talk to you as if you are there and hold your hand, give you a massage or climb into bed to embrace you. If you would like music to be played, then play their favorite songs.
They should do whatever they think you might like to comfort and support you.

It’s great if you have a hospice team in place to support you through this process. They can educate both you and your loved ones about what to expect at each stage along the way. Not everybody dies the same way but there are predictable patterns about what to expect. You don’t need to be afraid. You knew how to be born and you know how to die.

There is more information available on the Hospice Foundation of America website at www.hospicefoundation.org

Have a kind and respectful day.

Be careful about going to the hospital in July – It could be dangerous to your health

I was talking to legal nurse expert, Patricia Coonan, and she was telling me that there is a definite increase in medical errors in July. I have heard this joked about in the world of medicine, but it is not a joke. Errors increase every year at this time because this is when doctors in training shift to a new level of responsibility. The newly graduated doctor becomes an intern, the intern becomes a resident and the resident becomes a fellow. With this increase in responsibilities practically overnight, the doctor needs to be ever more vigilant about asking for help when they get into an overwhelming situation. It is normal for them to need help occasionally and they need to speak up at those times. Patricia says that medical negligence is usually not because the patient has the negative side effect, but is when the doctors or nurses don’t notice and fix the problem. Medical errors are normal because humans are taking care of us. And the younger doctors are still learning.

I am not telling you this to scare you but to make sure you are educated. You should always have a patient advocate at the hospital with you. You should ask what medicine is being given to you and what dose you are getting. If it is not on your list of medicines, ask why you are getting this new drug. You should make sure people are washing their hands before they touch you. You should make sure you have all of your questions answered before you sign a consent form. If you can, ask questions and make sure you are getting a consistent message from your doctors. If you are too ill to watch out for yourself, then get a love one to protect you and ask questions.

The only way you get new doctors is to train them. And they get trained by learning on all of us. These are real doctors and they have been well trained. I have had all of these levels of doctors take care of me when I was in the hospital and I was just fine. So, I am not saying you should be afraid of interns, residents or fellows. This is just a reminder to be your own patient advocate.

Addendum: Comment from Thaddeus Pope. HR 2705 bill before the House of Representative is unnecessary and may be dangerous when it comes to Advance Healthcare Directives.

**Addendum added on June 29, 2009. Thank you Thaddeus Pope, from medicalfutility.blogspot.com. He reminded me that the part of the advance directive that states “who” should be the decision maker may not be a problem for the doctor if it is written by a lawyer. The “what you want” section is the part we should be worried about. Thanks, Thaddeus.

The HR 2705 bill before the House of Representative would give a tax break to someone using a lawyer to complete their advance directive. While at first glance, I love it that the government is considering ways to make sure people have advance directives but there is a hidden danger. The danger is that doctors hate it when people have advance directives written by lawyers. The documents tend to be long and difficult to understand. When you are in the emergency room, you want to have a standard form that the doctors can read quickly and put to use. Not only will the lawyer’s advance directive annoy and confuse the doctor, it may not be read until much later after your life and death decisions were made without your input. That is not what you want. The whole point to the advance directive process is to make sure your voice is heard when it needs to be. What doctors would prefer is for you to use the standard forms found in your state. (see my resource page for one for your state)

Also, you should never have to pay anything for an advance directive. You can get a free one online or get one at the admitting desk of your hospital. Then you can have it signed by witnesses and you don’t need a notary. Just make sure the people witnessing follow the instructions on the form. Usually the witness can not be someone you are assigning to make your decisions for you or somebody in your will. Make sure you read your form carefully.

Please tell your representative to not vote for this bill. Nothing against lawyers. I believe that are definitely times that we should use lawyers. But this is not one of them.

Have a kind and respectful day.

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