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.

Dr. Solomon Liao from the Center for Excellence on Elder Abuse and Neglect at UCI, “Recognizing the signs of abuse and taking action” on Sept. 21, 10AM pacific,

r. Solomon Liao from the Center for Excellence on Elder Abuse and Neglect at UCI, “Recognizing the signs of abuse and taking action” on Sept. 21, 10AM pacific. blogtalkradio.com/kindethics

Dr. Solomon Liao is an Associate Professor, Medicine School of Medicine and the Director of Geriatric Education at the School of Medicine University of California, Irvine. The Center of Excellence in Elder Abuse and Neglect at the UCI School of Medicine, Program in Geriatrics, funded by the Archstone Foundation.

Locally, the Center of Excellence provides medical, forensic, and victim services to abused and neglected seniors and serves as a “living laboratory” of innovative approaches.
Statewide, the Center of Excellence serves as a central source of technical assistance, best practice information, multidisciplinary training, useful research, and relevant policy issues in California.

The Center of Excellence in Elder Abuse and Neglect serves through:

Direct Services – The Center of Excellence provides medical assessments, forensic evaluations, interdisciplinary case planning, linkages with existing resources, and the identification of available and needed services in Orange County.

Technical Assistance – The Center of Excellence provides statewide technical assistance to elder abuse programs in California. Two types of technical assistance will be offered: case consultation and program development/replication assistance.

Connecting Practice and Policy – To make a sustainable improvement in the field of elder abuse, it is crucial to connect practice and policy. The Center of Excellence uses the knowledge gained through a systematic and sound evaluation process to educate those in a position to make policy decisions.

Conducting Research – Through the faculty of the UCI School of Medicine Program in Geriatrics, the Center of Excellence provides the bridge between direct service and academics. Research at the Center of Excellence is currently funded through the National Institute on Aging, National Institute on Justice, and the California Department of Health and Human Services.

Providing Education – The Center of Excellence guides the UniHealth-funded Elder Abuse Training Institute in identifying California’s most pressing training needs in elder mistreatment. Multidisciplinary experts conduct discipline-specific training seminars for law enforcement, legal, medical, and social service professionals.

To learn more about UC Irvine School of Medicine’s Program in Geriatrics and Dr. Liao’s work, please visit our Geriatric Medicine website http://www.healthcare.uci.edu/seniorhealth/geriatricmedicine/index.asp.

An healthcare insider’s look at the healthcare debate from a money point of view.

Someone recently asked me what I think about the national healthcare debate. I don’t usually talk politics but I have decided to voice my opinion and to give you a healthcare insider’s view of the issue.

Part 1:
I am very angry about the death panel comments. Finally, Medicare was going to pay doctors to spend time listening to and respecting the patient’s end-of-life wishes. (Not telling seniors what to do, but listening and respecting.) These conversations already take place, but the doctor hasn’t been able to get paid for that longer appointment time. If a plumber spends 1 hour or 5 hours at your house, they can charge you appropriately. But the doctor can’t because if there isn’t a billing code for the service, the service can’t be billed. Now the doctors will continue to not be paid to listen to your wishes while they already are sacrificing not going home to their own family on time. This will be one more reason that doctors will leave the practice of medicine. You can only mess with someone so long before they say, “I am out of here.”

The idea of a death panel goes against everything in medicine. The last thing doctors want to do is to kill people. They went into medicine to heal and save. Doctors won’t participate in making sure the prisoner doesn’t feel any pain with lethal injections because doctors won’t agree to be a participant in a death. Doctors are very opposed to physician assisted suicide, even when the patient is in out of control pain and is begging for help with dying. (About 5% of the time, pain can not be managed no matter what medication is used.) These are the types of things that politicians can’t understand. The rules of medicine are deeply embedded in the culture of medicine.

Here is what I am also angry about. The healthcare debate has become a battle of political posturing and propaganda instead of trying to come up with a really great plan. I am angry that the politicians are designing the national healthcare program. Hospitals, doctors, nurses, economic experts, healthcare and public health experts etc. should be designing the government program. It would be like an electrician trying to teach your child in school. They are not trained to do that job and are not qualified. I am also angry with the politicians because they are forgetting or are ignorant to the rules of medicine. They can’t ask the doctors to jump through these new hoops to provide adequate care and still hold them to the malpractice standards in place. You can’t tie someone’s hands and then punish them when they couldn’t do everything they wanted to do.

Here are a few other insider perspectives.

Part 2:
1. We already have 3 large government run programs: Medicare, Medicaid and the Veterans Administrations. While those aren’t perfect, they are already a form of socialized medicine. If someone is against a government run program, then I suggest they turn in their Medicare card and go buy their own insurance. The doctors are already relying on the government (Medicare and Medicaid) to pay their bills because the other insurance companies are paying the doctors less and less after they provide services. The government part of healthcare is keeping hospitals and doctors in business.

2. The biggest problem is that there are too many stakeholders involved. Your employer buys your insurance, the insurance manages your healthcare dollar while taking a big cut for themselves, the doctors and hospitals take whatever they can get and eventually you get service. You are so separated from your healthcare dollars, that you can’t understand the true cost and value of what you are getting. If you buy a Chevy or a Rolls Royce, you understand why it costs what it costs because you are writing the check. But you don’t know what you are getting or what the actual costs are when you get medical care. Would you be willing to pay for the services if it was coming directly out of your pocket?

Next, if the insurance company wasn’t taking their cut, there would be plenty of money to care for even the uninsured. And if you are paying for healthcare, you need to realize that you are already paying for the uninsured. That cost is added to part of the charges the hospitals and doctors are billing your insurance company. Removing the insurance company as a middle man would really reduce your costs.

3. Doctors are fleeing the profession. I know doctors that can’t cover the costs of staying in business. One group of Ear Nose and Throat doctors haven’t been paid a salary for 6 months. They just cover the cost of running their practice and that is it. Would you be willing to work for 6 months without a paycheck? No. But doctors are so devoted to their work that they are enduring terrible hardships. But this won’t last. They can’t do this forever. We are losing the good doctors in record number. This is not a joke. Eventually we will have to recruit foreign doctors to fill our vacancies.

4. We don’t have enough emergency rooms still open. In Los Angeles, a large number of hospitals are still open but are no longer providing emergency services. Because of EMTALA, which mandates that anybody who comes to the emergency room must be treated, it is a tremendous financial burden to these institutions. The only choice they have is to close the ER or they will have to close the hospital. There is no emergency room near me.

5. You can not expect people to keep businesses open when they are losing money. And healthcare is a business that is bankrupt. The time is now to put a new plan in place that is fiscally responsible and can meet the needs of our growing and aging population. I am not the expert but there are experts out there that should be designing this plan for us. Stop the political bickering and get down to creating a viable healthcare system.

See this article for more discussion about our role in the healthcare debate.

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

Have a kind and respectful day.

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.

Rescheduled: Date TBD, Interview with Peter Lichtenburg Ph.D. on blogtalkradio.com/kindethic

Peter A. Lichtenberg, Ph.D., is the Director of the IOG and Professor of Psychology, Psychiatry and Behavioral Neuroscience & Physical Medicine & Rehabilitation at Wayne State University. Dr. Lichtenberg received his Ph.D. in Clinical Psychology at Purdue University, where he also minored in aging. Dr. Lichtenberg will be discussing dementia, Alzheimer’s and the work of the Institute of Gerentology at Wayne State University, including the work of the Healthier Black Elders Center.

www.iog.wayne.edu — blog
www.dementiacoalition.org
http://www.mcuaaar.wayne.edu/events.php — Healthier Black Elders Center

Director of the IOG since 1999, Lichtenberg has led this research and education unit to record levels of funding (annual totals for the past 8 years are a 300-400% increase from previous highs), to an expansion of research focus by recruiting faculty in the area of cognitive neuroscience, and the leadership of several highly successful training and mentoring grants (See below for details on the Predoctoral and Postdoctoral Training and on the Michigan Center for Urban African American Aging Research). Dr. Lichtenberg also created the first IOG-funded development Board of Visitors which in its first 4 ½ years raised over $2.25 Million dollars.

Dr. Lichtenberg is the author of five books, including the highly acclaimed Handbook of Dementia (2003, Handbook of Assessment in Clinical Gerontology (Wiley press, 1999) and A Guide to Psychological Practice in Geriatric Long Term Care (Haworth Press 1994). In addition, Dr. Lichtenberg has edited a four volume series for the organization Medical Psychotherapy, and has published over 125 peer reviewed scientific articles. His particular areas of research include mental health in long term care, geriatric depression, geriatric psychology and
medical rehabilitation and the early detection and management of Alzheimer’s Disease.

Dr. Lichtenberg has been awarded many distinctions including the 1996 Early Career Award in Rehabilitation Psychology, Fellowship in the Gerontological Society of America and the American Psychological Association, the Outstanding Contribution Award for Psychologists in Long Term Care, and both the 2001 Distinguished Faculty Award and Outstanding Mentor Award at Wayne State University. In 2002, he was the first educator to be given the Alzheimer’s Advocate Award. In 2004, on behalf of the IOG, he accepted community honors from the Area Agency on Aging 1C and Wayne County. In 2006 he was awarded the Harry Kelly Award for outstanding leadership in Gerontology

Dr. Lichtenberg is a leader in many national and community organizations in Detroit and the State of Michigan including chair of the http://www.dementiacoalition.org/>Michigan Dementia Coalition, past-chair of the Central City Aging Services Consortium, and Board member for the Area Agency on Aging 1-B Advisory Board. Nationally, Dr. Lichtenberg was the Chair of the
Behavioral and Social Sciences Section of the Gerontological Society of America (2007), Chair of the APA Committee on Aging (2008) and a member of the APA Presidential Task Force on Integrated Care for an Aging Population.

The Institute of Gerontology at Wayne State University brings together science and service to advance the cause of aging research. Its multidisciplinary faculty, post-doctoral fellows, and pre-doctoral trainees focus on the social and behavioral aspects of lifespan health and cognitive development. Dedicated to promoting successful aging, the Institute of Gerontology is where research and outreach combine to make life better in Detroit and beyond.

Improving Bedside Manner While Managing Your Time

Your bedside manner will affect the medical outcome of the patient. Here are some easy tips you can do in your office. The first thing you want to do is to briefly review the chart before you walk in the room. Usually physicians will start looking at the chart once they’ve entered the room and will be so busy reading the chart, that they missed the opportunity for a warm greeting and good eye contact. So while you’re in the hallway, before you open the door, do two things. Review the chart quickly and check in with yourself. You want to check in with yourself that you’re ready to go in and be present with this particular patient. Even if your mind has been thinking about other patients in the office or the hospital, or if you’re thinking about your kid’s soccer game, stop and redirect your focus. Then when you walk in the room, the patient will feel like you are there for them and that you are paying attention. As you walk, greet the patient warmly and use culturally appropriate nonverbal skills. Don’t assume that the patient hasn’t minded waiting for you, they do mind. Apologize if you are late.

Please don’t sit behind a desk. The desk can be cold and distancing. The patient will feel more comfortable if you sit with them in the exam room. If you can, please talk to patients with their clothes on as patients can be very uncomfortable sitting in a small gown or with just a drape covering them up. If you’re using electronic medical records and are just now getting used to doing the patient interview in front of a computer screen, please remember to look up from the screen and to make sure you stay connected to the patient. I know the new technology takes some getting used to, but you can’t afford to have the patient feel like you don’t care. You also want to make sure that you don’t make the patient a third-party patient. This is when you talk to their caregiver and ignore the patient. Even if the patient doesn’t have full capacity, keep them included in the conversation.

Remember that the conversation should be a dialogue, not a monologue. Leave plenty of time for listening, especially at the beginning of the conversation. If you do want to connect with the patient on a personal level, don’t make the mistake that many doctors do. Doctors will begin to tell the patient about their own hobbies or interests. Don’t tell the patient more about you, instead you want to listen more to discover things about them. You also want to look for moments of caring where you can reach out and give the patient and family the needed reassurance. Don’t just focus on the symptoms the patient is reporting. Make sure you ask the important questions about how their lifestyle or culture may be contributing to their illness.

These are just a few tips I teach doctors when we talk about bedside manners and how to improve medical outcomes.

Have a kind and respectful day.

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