A Good Death – The Patient Gets to Decide

A good death is what the patient tells us it should be. No one can define what would make a good death for another person. We have to ask.

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.

We have to ask the patient what they would want and then respect their answers. We have to respect the person. It is their life and their death.

I know it is difficult to accept when people want things we don’t understand. For instance, for some people suffering has meaning. If I understand this, I can understand when the patient doesn’t want to take their pain pills. Or if they want to trade a little bit of pain control for increased consciousness, then I will understand if the patient will only take a little of their pain meds. It is their death. We need to listen to them.

When I work as a hospice volunteer, I have lots of ideas for things people might want to do to create a legacy for their family but that is only if the person wants to. But I don’t assume that what other people want is what I would want. I ask. If someone wants to record their life history on an audio or a video tape, I will help them. Or perhaps they will want to write love letters for their family to open after they are gone. And some people want to write an “ethical will” outlining what values and beliefs they would like to pass on. Or if they would rather avoid thinking about dying, then I honor that. It is their decision to make. They get to choose what makes a good death for them, so I listen.

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.

Are you interested in becoming a legal nurse? Patricia Coonan will tell you what you need to know to transition into this rewarding profession. August 10, 2pm pacific on blogtalkradio.com/kindethics

Are you no longer able to be a nurse due to latex allergies, a back injury or are you just looking for something with more flexibility.  You may want to consider becoming a legal nurse consultant and putting all of your knowledge and compassion into helping others in a new way.  Patricia Coonan will be answering your questions regarding how to transition into the rewarding career of legal nurse consulting. Call in to listen live at (347) 945-5152 or listen online at blogtalkradio.com/kindethics.

Patricia been a RN for 24 years and Legal Nurse since 1997. She works for the Beasley Firm as an In-House Consultant and Legal Assistant. If you are being sued, she is the person that would go through the medical records to see what happened and if you have deviated from the Standards, Protocols and Industry Practices and if you may be negligent.

Patricia has also created a training program for those nurses interested in going into the legal field. If you are interested, you can find her products on eBay under Prrn12 or at www.legalnurseprrn12.com or at pc-rn@comcast.net.

You can follow her on Twitter: pcRN or reach her at pc-rn@comcast.net.

For legal help, The Beasley Firm website is http://www.beasleyfirm.com and their offices are as follows:
The Beasley Building
1125 Walnut Street
Philadelphia, PA 19107
Phone (215) 592-1000
Fax (215) 592-8360
3000 Atrium Way
Suite 258
Mount Laurel, NJ 08054
Phone (856) 273-6966
Fax (856) 273-6913
Have a kind and respectful day.

DNR (do not resuscitate or no CPR) does not mean do not treat or do not care. A warning for all of us.

Dear Viki,

I noticed that after my dad became a DNR in the hospital, the nurses didn’t come into the room as often anymore and the doctor didn’t visit the way he used to. Just because my dad didn’t want to have CPR didn’t mean that he still didn’t want to fight his cancer. But it seemed like everybody gave up on him. Did the DNR (do not resuscitate) decision really mean, Do Not Care?

I realize that not only are patients confused about what DNR means (do not do CPR), but nurses and physicians are also confused. I know that’s not what you want to hear, but it’s true. Somehow DNR has become a decision about treatment choices instead of just CPR. What DNR should mean is only one thing, do not do cardiopulmonary resuscitation.

Research has found that if a patient is a DNR, then healthcare professionals may believe that the patient doesn’t want any other types of aggressive treatment. But this isn’t true. A patient may want chemotherapy, surgery, radiation therapy or other kinds of aggressive treatments, and still not want to receive CPR. A DNR doesn’t tell you anything about what other treatments the patient might or might not want to receive.

I’m not telling you this to scare you out of being a DNR. Not at all. I am just reminding all of us that one part of the end-of-life decision making process does not dictate everything else we might want. So yes, you can be a DNR and still have appropriate aggressive medical treatments. Or you can be a DNR and choose only to have hospice care. Or you can be on hospice and not be a DNR. Or you can choose some of the medical treatments being offered and refuse others. These are all separate decisions. You get to choose from all of the appropriate medical options available. Choose some, choose all or choose none. It is up to you. The only thing you can’t choose is a treatment that is not a valid medical option. You cannot make the doctor gave you ineffective or non-beneficial treatments. You are only allowed to choose from the list of medically appropriate treatments for your condition.

Lastly, as a reminder to all the healthcare professionals. A DNR never represents a do not care order. We should still be going into their hospital room as often as we would for someone without a DNR. We should always treat the patient with respect and dignity and provide comfort care to manage their suffering.

Have a kind and respectful day.

When A Stranger Decides If You Should Live Or Die

There are so many things that happen behind the scenes in healthcare when it comes to dying. One of the hardest things for me to witness is when a patient has no one to speak for them at the end. We call this person the unrepresented patient or the unbefriended person. This is a person without any friends or family who can make sure they have a good death. So what happens to them? In some cases, a public conservator or guardian is appointed to make their decisions for them. This is a stranger making decisions for another stranger. There is nothing personal or meaningful in this process. The other thing that happens, if there isn’t a guardian available, is a group of people at the hospital will make the decision for this person. Sometimes we call this an advocate team and or a moral community. This group usually consists of a doctor, nurse, social worker, chaplain, members of the ethics committee and community members. As a group they will make the decision whether this person should live or die. Unfortunately this decision is based on very little information about who this person is or what would is important to them in their life. It is usually a medical decision instead of a human decision. Not that the advocate team doesn’t try to make it personal.

Let me tell you about one such patient who had this group of strangers make his decisions for him. This was an 83-year-old gentleman who had been living in a nursing home for the past 12 years. At the nursing home, he was able to eat and walk around, but he had severe dementia and could not communicate with the staff. In the 12 years he had been living there, nobody ever visited, nobody ever called and nobody sent him a letter. He had become invisible. The staff cared about him and took good care of him but they were not family. Just before I met this man, he had a massive stroke which left him paralyzed, in a coma, unable to eat or drink and dying. The social workers at the hospital did everything they could to try to find somebody who knew this man but nobody could be found. I live in Los Angeles and we don’t have enough people who are willing to be a public conservator or guardian. So now we use advocate teams to help make decisions for those who are completely alone and silenced by their disease.

I came into the hospital that day and I went to the patient’s bedside because I refuse to make a decision for somebody that I haven’t met or tried to connect with. I knew this person wasn’t going to be able to communicate back to me, but as I sat at his bedside, I held his hand and connected with the human inside this body in the bed. The only noise in the room was the sound of the machines breathing for him. His body was a shell and it seemed like he was already gone. I sat with him and talked to him and told him that I would try to do right by him. I cried a few tears as I realized he was already gone. These are the difficult moments in my job.

I went to the meeting and heard what the doctors had to say and listened to what the social worker had discovered about this man. This was a man who was dying and there was nothing we could do to change it. We asked all the questions we could think of about his medical condition and if there was any hope. We were told there was not. I then asked the social worker about who this person had been at the nursing home. Had he enjoyed his meals? Had he enjoyed interacting with others? What had brought him joy even in his limited condition? He had been living a life with small pleasures and not too much suffering. But now, he couldn’t feel anything. He couldn’t enjoy eating a cupcake, watching something on TV or going to the sing-along in the activity room.

In the advocate team meeting, we all have to agree on what we think we should do. In this team meeting, we decided that there was no way he was going to be able to return to enjoy any part of his life. He was dying and there was no turning back. Our team agreed that he should be made comfortable and be allowed to die a natural death. This included being taken off the ventilator and being allowed to die.

I wasn’t going to tell you his name because he had become invisible to the world. But I have changed my mind because he wasn’t invisible to me. His name was James and I was part of his life and his death.

These are really difficult decisions. These are decisions that should not be made by strangers. But people in hospitals all over the nation are having their life and death decisions made by committee. This is not how it’s supposed to be. People shouldn’t be dying alone and they shouldn’t be living for 12 years without one person visiting them.

Sometimes it’s hard to do the work I do. Sometimes it breaks my heart. But I have the courage to walk into the darkness with people. Whether it’s the family who is grieving at the bedside, the patient who is afraid of what is happening to their body or the health care professional who can’t bear to participate in one more death. I walk with people on this journey and ease their way.

Have a kind and respectful day.

“Medical Futility and a Legal Update From Across the Nation” Interview with Thaddeus Pope J.D, of the MedicalFutility.blogspot.com. August 4th, 10am, pacific. Call in to listen live at (347) 945-5152 or listen online at blogtalkradio.com/kindethics.

I am honored to be interviewing the legal expert on futility, Thaddeus Pope J.D, regarding the issue of medical futility. You may not have heard much about this issue but you are going to be hearing a lot about it in the upcoming debate on healthcare reform. Every time President Obama says that we have to stop paying for treatments that will not work, he is talking about medical futility. Or when the politicians discuss using our healthcare dollars wisely, they are talking about medical futility. In healthcare, the number one problem being brought to bioethics committees is dealing with requests for treatments that are medically inappropriate or will not work. I encourage you to listen to this interview because when you or your loved one is in the hospital, this issue will be playing a factor in your treatment decisions. And even more importantly, this issue will be shaping the healthcare plan that is being proposed. Please let me know where you stand on this issue and feel free to call in with your questions.

“Medical Futility and a Legal Update from across the nation” interview with Thaddeus Pope J.D, of the MedicalFutility.blogspot.com and www.thaddeuspope.com. Call in to listen live at (347) 945-5152 or listen online at blogtalkradio.com/kindethics.

Thaddeus Pope is an Associate Professor of Law and member of the Health Law Institute at Widener University School of Law. He came to Widener in 2007, after teaching at the University of Memphis since 2005. Before entering academia, he worked seven years for Arnold & Porter LLP (in Los Angeles and Washington, DC), and clerked for the U.S. Court of Appeals for the Seventh Circuit. He earned both my J.D. and Ph.D. (in philosophy & bioethics) from Georgetown University.

His current research focuses on:
Medical Futility and other legal obstacles to good end-of-life care
Internal Dispute Resolution mechanisms in healthcare, particularly ethics committees
Tort Law, particularly consent and the assumption of risk doctrine
Public Health Law, particularly the legitimacy of restricting voluntary self-regarding conduct
Normative Jurisprudence, particularly the justifiability of hard paternalism

He teaches the following courses:
Health Law I (Patient Care & Liability), End-of-Life Decisions Law, Health Law II (Finance & Regulation), Bioethics, Torts, Public Health Law, Business Organizations, Health Law Thesis

You can get copies of the articles he has written at:
www.thaddeuspope.com
http://works.bepress.com/thaddeus_pope/
http://papers.ssrn.com/sol3/cf_dev/AbsByAuth.cfm?per_id=180178

For more information about Thaddeus Pope go to: http://thaddeuspope.com/images/Pope_Bio_1p_-_futility_.pdf

“The Compassion Fatigue Project” Interview with Patricia Smith, August 3rd, at 9AM pacific. Call in to listen live at (347) 945-5152 or listen online at blogtalkradio.com/kindethics.

“The Compassion Fatigue Project” Interview with Patricia Smith, August 3rd, at 9AM pacific. Call in to listen live at (347) 945-5152 or listen online at blogtalkradio.com/kindethics.

Patricia Smith, founder of the Compassion Fatigue Awareness Project,
has published To Weep For A Stranger: Compassion Fatigue In
Caregiving. Along with in-depth explanations of compassion fatigue and
its symptoms and causes, the paperback features the following
comprehensive chapters:

Chapter 1: When Caring Too Much Hurts
Chapter 2: What Is Compassion Fatigue?
Chapter 3: Burdens Of The Chosen
Chapter 4: The Decision To Heal
Chapter 5: Standards Of Self-Care
Chapter 6: To Family Caregivers
Chapter 7: To Those Entering The Helping Professions
Chapter 8: When the Workplace Suffers
Chapter 9: To Weep For A Stranger

To order direct from the Createspace website for only $15, visit:

http://www.createspace.com/3393286

Workbooks:
Healthy Caregiving: A Guide to Recognizing and Managing Compassion Fatigue Level 1 –
Presenter’s Guide www.createspace.com/3363699

Healthy Caregiving: A Guide to Recognizing and Managing Compassion Fatigue Level 1 –
Student Guide www.createspace.com/3363698

CF Marketplace: http://www.cafepress.com/CFMarketplace

To Weep for a Stranger: Compassion Fatigue in Caregiving
www.createspace.com/3393286 (available 7/14/09

Have a kind and respectful day.

A Timeline Tool For When You Are In The Emergency Room

Dear Viki,

I got a call from someone as her grandmother was being taken to the hospital. Her grandmother’s doctor wouldn’t come to the hospital even though her mom had chest pain and very high blood pressure. After asking more questions, I explained to her that the probable reason the doctor wouldn’t come to the hospital was that he didn’t want to interrupt his weekend plans. I know it is cruel to say, but it is probably true. I know there are lots of great doctors out there but you have to realize that I only get called when there is a problem. (Now before the doctors reading this get angry, the person had a blood pressure of 240 over 110, chest pain, vomiting and the doctor said to not take her to the hospital. And the doctor was on call that weekend.) I also know that doctors are real people and they hate being on call on a holiday weekend. I don’t blame them. How would you like to have your day interrupted and have to leave in the middle of your most precious family events? This is one of the sacrifices they make for us.

So back to the story:

I talked the person through what to say to the ER doctors to make sure they got what they needed. I explained how to get the services she needs by using respect and good communication. You have to make it easy for the doctor because time is limited. You need to organize what you are going to say, be clear and give both the current facts as well as the past medical history. Here is where you have to be careful. You have to focus on telling them what is relevant to this situation. My dad would go to the doctor for a pain in his leg and then spend his time talking about his dysentery from World War 2. It was not the same body part and it was 60 years ago. Yes, you should give information about the person’s medical past but try to make sure it is relevant to the situation. But you may not know what is relevant so instead you can create a timeline for the doctor. (Keep a copy with you and with the patient for emergencies.)

One way you can do this is to construct a written timeline of the patient’s health. Here is an example:

1945: dysentery during the war
1988: cataracts diagnosed
1998: double bypass surgery
1999: cataract surgery
2001: prostate surgery for enlarged prostate
2002: allergic reaction to sulfa drugs
Include a list of medications and allergies

Now the doctor can see all the important events and he can get to the information quickly and effectively. Then you can spend more time talking about the present situation. The more you help the doctor whether it is in the office or in the hospital, the more they can help you.

Have a kind and respectful day. Viki Kind at KindEthics.com

Why isn’t the insurance company paying my bill?

Dear Viki,

I just got a bill from the hospital, but I don’t think it is right. It says I owe money but I have insurance. Why isn’t the insurance company paying my bill? What do I do next?

There are so many reasons your insurance isn’t paying the bill. And I know that it can get overwhelming as you receive bills from different offices, different doctors, different labs and from people you’ve never even heard of. Instead of getting frustrated, ask for help. If the person you’re working with is not helping you, ask for someone else in the department. Unfortunately many people who work in medical billing are often under trained, underpaid and overwhelmed. So it may take talking to many different people to get the help you need. For me the first thing I do is to take all the bills and organize them by date of service. Then I can match what was done to me with the bills I have in front of me. And then I begin following the instructions I have listed below.

Let’s start from the beginning of the story and find out what might have gone wrong.

1. When you went into the doctor’s office or hospital, did you give them your correct insurance information? Not the old card, but the newly updated card?
2. Do they have the right address for your insurance company?
3. Have you been paying your insurance premium so your insurance is still in place?
4. If you have two insurances, did you tell them which insurance is primary, so they billed the right insurance first? Do you know which insurance is your primary insurance?
5. Did the office or hospital ever send the insurance company the bill? Surprisingly, the billing staff does not always do their job so sometimes the reason the insurance doesn’t pay the bill, is because they never got the bill. Call your insurance directly and ask if they have a copy of the bill and if so, why they didn’t pay it? If they don’t have the bill, ask them for a direct name and fax number that the bill where the bill can be sent. Then give this information to the doctors or hospital’s billing department and then follow up with them in one week.
6. Now let’s talk about the referral/authorization process. For many people’s insurance, you have to have a referral before you see certain doctors or receive certain tests or procedures. Or if you are in the emergency room, have someone in your family call your insurance right away and get the authorization for you to be in the emergency room. Did you get that referral? Did the office staff call for your referral? Did you call the insurance company to make sure the referral was done before your surgery? And did you make sure that all of the doctors that would be working on you during your surgery are covered under your insurance plan? If you don’t get the referral, you may be responsible for the entire bill and you definitely don’t want this. Never assume that it is all taken care of. Make sure you call the insurance company and get the referral number yourself. They should also send you a piece of paper that tells you that you have been okayed to have the test or surgery or see the specialist that your doctor recommended. You have to be an active participant if you want the bills to get paid.
7. Maybe your doctor’s office did everything right, had the right insurance card, got the referral ahead of time, billed the right insurance but still there is no payment. Now it is time for you to get on the phone and ask the insurance company what the problem is and why there is a delay in sending out the payment. You may also want to go to the doctor’s office and have the billing person call the insurance company while you wait. That way, if there is a question, you can be there to help and to make sure it got done.
8. Now many doctors offices use outside billing departments and the person you need to talk to will only be available by phone. This is when you have to hold your temper. I know you are frustrated but if you yell at them they won’t help you and you’re going to get stuck with the bill. So calmly, talk to the billing person and find out what they think is going on. You can offer to call the insurance company yourself to help them solve this problem. Since you want them to be on your side, remember that they will be more willing to help a polite person than a screamer. Thank them for all of their effort even if the problem isn’t completely solved because you will probably be working with them again when they mess up your bill the next time.
9. Many times, the bill itself was not created correctly. There are codes and details that must be typed in and sometimes these are typed in incorrectly for whatever reason. This is when you need to ask for a billing manager to help you check that the codes that were used were the right codes and that the details on the form match your insurance and personal information. It may be as simple as your insurance number was typed in incorrectly or it was sent to the wrong address.
10. After you do everything you can to get the correct bill to the correct department of the insurance they still may not pay your bill. If they won’t pay the bill you can appeal their decision. You will need to ask the insurance company how to appeal their decision and what you will need to do to provide the information they will need to change their minds. Sometimes, the doctor needs to send more documentation or a different code needs to be used. Even after the appeal, you may still be responsible for this bill. The worst thing that happens is when you didn’t get the appropriate referral and now it is too late. This is why getting the referral is crucial before you go to specialist, go to the emergency room, have the procedure or have the surgery.
11. I want to caution you to not get frustrated and to stop working on this situation. The doctor’s office will eventually send you to collections and the collection agency will eventually report your delinquent bill on your credit report. Then you are in worse trouble. The collection agency knows even less about getting the insurance company to pay and they are not particularly interested in helping you, just getting the money from you. And they will sue you. This is when you have to take immediate action before the collection agency takes action against you. Call the insurance company for help and go back through the steps above. The doctor’s office will not help you at this point as they have referred you to collections. You can try begging the doctor to take your bill out of collections but that rarely works. The doctor’s office or hospital has already tried to get you to pay for months and are frustrated with you. Please try to take care of this problem before it gets to this point. If it gets to this point, it may be too late now and you may be stuck paying this bill.

If you really do owe the money after the insurance paid their part:

Now your insurance paid, but now the doctor is asking you for money that you don’t think you owe. There can be lots of confusion. You may be right or you may be wrong. The first thing you want to look at is something called the EOB or the explanation of benefits. This is the form the insurance company sends the doctor and hopefully you, which explains why they paid what they paid and who was responsible for the balance. When you look at the explanation of benefits you are looking for the word’s “patient portion” to figure out how much you owe. This is another place where the billing department may make mistakes. They may forget to do the write off that is required by the insurance contract with the doctor’s office. And they may be billing you for the wrong amount.

You may also be the problem. You may not understand what your policy requires and what your portion of the bill should be. Before you get really angry, call the insurance and have them talk you through it. If the doctor’s office is wrong, ask them to make the corrections and to let you know when it’s accomplished. Put it on your calendar to call them in a week to make sure it really got done. You don’t want a surprise letter from a collection agency in your mailbox.

If you do owe the bill, whether it’s to a doctor’s office or a hospital, if you call right away they may be willing to set up a payment plan. The longer you delay, the less likely they will be to work with you. They may also have a special program set aside for people who cannot pay their bills. Again, it is better to communicate directly and work with them to solve these issues. The billing department may also be able to help you sign up for services such as MediCal or MediCaid.

Create a caregiver manual to help you train your next caregiver.

Dear Viki,

I have to hire a new caregiver for my dad. I get so tired of having to take time off of work to train the new person. Is there anything I can do to make this easier?

Yes, I recommend creating a caregiver manual just like you might have an employee manual at work. The way to do this is when you are training this new caregiver, write down everything you are telling the new person. Write down things like how your dad likes his sandwich made or what time he takes his naps. Create categories such as food preferences, activity preferences, clothing preferences, schedule preferences, medications, allergies, emergency numbers etc. Whether you write it down in a notebook or on the computer, keep adding to it as you train the person. Then give the new caregiver a copy so they can refer back to it. You can also ask the caregiver to write notes in it as things change or as she/he learns new things about your dad. This way, the next time you have to hire a caregiver, you have a head start. You can give the training manual to the new person to read before they start and they can use it as a reference for those first days when you leave them on their own. This doesn’t mean you won’t have to train them. You just won’t have to make yourself crazy trying to remember if you have gone over everything with them and you won’t forget to mention something important. (Keep an extra copy in a safe place. You don’t want a disgruntled employee to take off with your only copy.)

Have a kind and respectful day.

« Previous Page — Next Page »