This week I ran across a posting by a Dr. Luks, a physician I follow on Twitter.  The information was originally written by another physician blogger.  Dr. Rob who writes Musings of a Distractible Mind posted this and it ran in the NY Time Health issue.  I was compelled to include this information here as well.

Rule 1: They don’t want to be at your office.

It may seem odd to patients, but most doctors forget that going to the doctor is generally unnerving. We work there, and being in a doctor’s office is normal to us. Not so with most patients. The spotlight is on them and their health. They stand on the scale, undress, tell intimate things about their lives, confess errors, are poked, prodded, shot with needles, lectured at, and then billed for the whole thing….There is always an underlying fear and self-consciousness that pervades when a person is sitting on the exam table. The best thing to do in response to that is to show compassion.

Rule 2: They have a reason to be at your office.

They don’t come to the office to waste the doctor’s time. Yet early in my training I was incredulous at the reasons some of my patients were coming to see the doctor. Why come in for a headache? Why come in for a cold?…It took me being in my own practice (and trying to keep my business going) to realize that there is (almost) always an underlying reason for a patient to come in. Sometimes that reason is simple: they have terrible pain that needs to be treated. Other times, however, the reason is more subtle. When a person comes to my office with enlarged lymph nodes, for example, the real reason they are coming in is that they are afraid it is cancer. If a person has chest pains, they are afraid it is their heart. On every visit I try to identify the real reason (or the real fear) that brings them to see me. I don’t end the visit until I have addressed that reason.

Rule 3: They feel what they feel.

Patients will often tell me their symptoms in a very apologetic tone. They seem to think that they have to come to me with the “right” set of symptoms, and not having those symptoms is their fault. Sometimes those symptoms make no sense to me at all, and I am tempted to dismiss or ignore them. But as a physician, you have to trust your patient….Yes, some may exaggerate what they feel out of anxiety or out of fear that you won’t hear them for lesser symptoms, but then your job is to uncover the anxiety, not ignore the complaint. I have heard from many patients that their doctor “did not believe” their complaints because they did not make sense. If you don’t trust them, why should they trust you?

Rule 4: They don’t want to look stupid.

People are often worried that they are over-reacting. They wonder what I must think for a person to come to the office with that symptom. This is especially true of parents bringing their children in. Nobody wants to be “that mother that over-reacts to everything.” In response to this, I try to specifically say, “I am glad you came to the office for this because…” or “Yeah, I can see how that worried you because it could be….”

Rule 5: They pay for a plan.

What do people pay for when they come to the medical office? They pay for opinion, yes. They pay for knowledge as well. But what they really pay for is a plan of action….They want to know what is going to be done to help. I try and give a plan, either verbal or written, to each patient that walks out of the exam room. What medications are given and why? What medications are to be stopped? What tests are ordered and what will the results mean? When is the next appointment? What should they call for if they have problems? The better I can answer these questions, the more confidently the patient will walk out of the exam room. The days of paternalistic medicine are over – no handing a prescription and just saying “take it.” Patients should know why they are putting things in their body.

Rule 6: The visit is about them.

With all of the stresses in a doctor’s office, I get tempted to complain about things. Who better to complain to than someone who feels much the same way? But patients are paying for you to take care of their problems, not the reverse. I keep my personal gripes or frustrations to myself as much as possible.

As a Registered Nurse, and more specifically as a case manager, I feel that if physicians would take the time to study these six simple rules we would see a far greater satisfaction with our healthcare system.  So much of my job is filling in the blanks left by the physicians.  I realize there is not enough time to spend with our patients.  The current payment system for medical services does not allow the face-to-face time that our patients need and deserve.  My job largely came out of this need.

Every day I spend countless hours listening to patients, helping them to determine if their symptoms warrant urgent treatment, explaining medication usage and side effects, aleviating fears, sharing alternative treatment options, and just being there for them.  I love the patient advocacy part of my job, but not everyone has access to a nurse when needed.  The average patient goes to their primary care doctor for these very same things.  Even when I attend an appointment with my client, I find myself having to reiterate the entire visit because they did not have time to digest the information due to the very quick face-to-face interaction.

It is time our doctors realize what a huge difference they can make even in the ten minutes they spend with their patients.  Putting yourself in the place of the patient should help alleviate any attitude you might have.  Secondly providing time for questions.  Make sure when the patient leaves they have a written plan of action that they can review after they leave the office.  Provide an avenue for questions that arise only after they leave your office.  It would make my job a lot easier. 

Do you have any other suggestions in providing care for our patients?  As a nurse what interactions do you have with patients outside of the doctor’s office?  What recommendations would you make to extend the few minutes one has in front of the physician?

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Patient Advocate

A study out by HealthGrades reports 195,000 in-hospital deaths secondary to medical error. 37 millions records were reviewed for 2000, 2001, and 2002 and deaths averaged 195,000 for this time period. They also found this accounted for $6 Billion in extra costs per year. This study covered all 50 states and four major areas of concern were noted.

• Failure to rescue
• Bed sores or pressure ulcers
• Post operative sepsis
• Postoperative pulmonary embolism

The study also highlights these scary findings.

• Of the total 323,993 deaths among Medicare patients 81 percent, of these deaths were directly attributable to the incident(s).
• One in every four Medicare patients who were hospitalized from 2000 to 2002 and experienced a patient-safety incident died.
• The 16 patient-safety incidents accounted for $8.54 billion in excess costs to the Medicare system over the 3 years studied. Extrapolated to the entire U.S., an extra $19 billion was spent and more than 575,000 preventable deaths occurred from 2000 to 2002.
• Overall, the best performing hospitals had five fewer deaths per 1000 hospitalizations compared to the bottom 10th

Now that you have these scary facts, what do you do about it?

The number one thing you can do to prevent your loved one from becoming one of these statistics is to assign or obtain a patient advocate. There are other things such as checking out your hospital, your medical provider, etc, but even at the best hospital and with the best physicians errors can occur. Our medical system is overburdened and while most medical providers really wish to give you their best mistakes still happen.

A patient advocate is a sort of broad title that encompasses a variety of services for patients.  Services provided include medical assistance, insurance assistance, home health assistance, elder or geriatric assistance and even legal assistance.  A patient advocate speaks, pleads, or intercedes on behalf of the patient.  We help patients and their families with problem situations (like hospitalization) and strive to educate patients, physician and the public on health issues and communication difficulties.

Illness and related hospitalization can be a stressful time for patients and families.  Patients need someone to look out for their best interests and help to navigate the confusing and ever changing healthcare system.  Choose an advocate that can accompany you to tests, appointments, treatments and procedures.  Look for a medical person such as a nurse to help you make sense of the medical jargon and provide information or other opinions.  He or she should be assertive and have excellent communication skills.  Nurses are trained to be patient advocates and nurse case managers, such as myself, advocate for others as our primary job.

When selecting a patient advocate to assist you or your family, consider the following questions:

• Have you handled cases similar to mine?
• What is your background or training?
• Do you have time to handle the work I need assistance with?
• Can you provide me with references?
• Are you on call around the clock or do you have specific hours?
• Are you available for telephonic services?
• Do you provide written reports?
• What are your charges for service?

To read about hiring a patient advocate, check out this article in The New York Times.  There is also a Consumer Reports Health blog about locating a good patient advocate.  Another New York Times article tells a personal story of a patient advocate.  You can read it here.  A Twitter friend of mine, Trisha Torrey, also has a wonderful website and blog about this issue.

To read more about the HealthGrades study, see the PRESS RELEASE or search HealthGrades.com.

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As a member of the Editorial Board for the Journal of American Association of Nurse Life Care Planners, I am in charge of our fall journal which carries a theme of Life Care Planning for those with amputation.  Typically this means that I am in charge of locating articles for submission, sending them in to the board members for review and editing, meeting deadlines, making suggestions for topics and the like.  I have made it a personal goal to also write at least two articles to be included in this journal.

In the next few weeks I will be posting resources that I have collected as part of my writing goal.  I was surprised that there are numerous resources available, yet I was unaware of most of these despite my special interest in amputation injury.

Please enjoy these resources and pass them along when appropriate.  Many of the resources can be used for disabilities other than amputation.

Advocacy Resources:

American Association of People with Disabilities

800.285.844

www.aapd-dc.org

American Bar Association

800.285.2221

www.abanet.org/disability

Americans with Disabilities Act Hotline

800.514.0301

Amputee Coalition of America

888.267.5669

www.amputee-coalition.org

Fair Housing Act

202.708.1112

www.hud.gov/offices/fheo/FHLaws

Independent Living Centers Directory

www.virtualcil.net/cils

National Patient Advocate Foundation

757.873.0438

www.npaf.org

SNAP: Special Needs Advocate for Parents

888.310.9889

www.snapinfo.org/home.html

Voices for America’s Children

202.289.0777

www.childadvocacy.org

Wrightslaw

www.wrightslaw.com

Advocacy Publications

“Advocating for Your Child.” Rick Bowers. Expectations. 2005, pp.30-31.

www.amputee-coalition.org/expectations/advocating.html

“Taking Charge: How to Become your child’s best advocate.” Jenifer Simpson and Helen Rader. inMotion.May/June 2001, pp. 16-18.

www.amputee-coalition.org/inmotion/may_jun_01/childs.html

What is your favorite advocay resources?  Have we missed something?  Send your suggestions to be included.

Today I thought I would share some resources that are related to the legal aspects of caregiving.  These links are associated with wills, work, disabilities, and other forms of advocacy.  Please feel free to notify me of others which I may have missed.  I would like this to become as comprehensive as possible.

Arkansas Adult Protective Services: Adult Protective Services assist vulnerable and elder adults to stop and  prevent abuse, neglect, or exploitation. Anyone can make a report about suspected abuse to the Hotline. Adults age 60 and older and adults with disabilities.

(800) 482-8049

http:/ / www.aradultprotection.com

Arkansas Area Agencies on Aging (AAA): AAAs offer aging services, including:
• Information and assistance
• Care management
• Nutrition services (i.e., Meals on Wheels)
• Legal assistance
• Services for family caregivers through the Family Caregiver Support Program (FCSP)

(866) 801-3435

http:/ / www.arkansas.gov/ dhs/ aging/ aaamap.html

Arkansas Legal Services Partnership: Non-profit organization advocates for the legal rights of low income residents of Arkansas. Offers the following services:
•Legal representation
•Legal hotlines by county
•Education (elder, family, consumer law)

Low income residents of Arkansas

http:/ / www.arlegalservices.org

Arkansas Long Term Care Ombudsman: Ombudsmen  investigate complaints made by, or on behalf of, individual residents in long-term care facilities, including nursing homes and assisted living facilities. They also answer questions about the quality of care or financial, physical, or mental abuse in residential facilities. (501) 682-2441

http:/ / www.arombudsman.com

Arkansas People First: Non-profit self-advocacy group run and controlled by persons with disabilities that offers self-advocacy training. Also provides online community chat groups and message boards. Individuals with any type of disability. (888) 488-6040

http:/ / www.arkansaspeoplefirst.org

Arkansas Volunteer Lawyers for the Elderly, Inc. (AVLE): Organization provides free legal assistance and services to low income older adults. Services are not available in the following counties: Pulaski, Saline, Faulkner, Lonoke, Jefferson, Garland, Hot Spring, and Clark.

Multiple requirements:
•Adults age 55 and older
•Low income
800-999-2853
Arkansas Volunteer Lawyers for the Elderly

Disability Rights Center (DRC): Non-profit organization advocates on behalf of people with disabilities in Arkansas. Also offers the following programs:
• Representation in cases of complaints filed against the Department of Vocational Rehabilitation
• Advocacy for individuals with Traumatic Brain Injury (information, referral, and legal representation)
• Protection & advocacy for beneficiaries of Social Security
• Protection & advocacy for individuals with Developmental Disabilities

Eligibility varies by program. (501) 296-1775
http:/ / www.arkdisabilityrights.org

Senior Health Insurance and Information Program (SHIIP): Assists individuals and families with eligibility questions and problems related to Medicare,  including prescription drug coverage under Medicare Part D, managed care, long-term care planning,  health insurance and other health care issues.  (800) 224-6330
http:/ / insurance.arkansas.gov/ seniors/ homepage.htm

AARP (Online Resources): A consumer organization for people 50 years and older. Provides online information about issues related to aging, including:
• Long-term care and retirement
• Financial and legal information
• Resources on family caregiving
• Internet resources on aging

(888) 687-2277
http:/ / www.aarp.org

Aging with Dignity: Provides older adults and their family members with practical information, advice and legal tools to ensure wishes at end-of-life will be respected, including the Five Wishes Living Will document.

http:/ / agingwithdignity.org

American Bar Association (ABA) – Commission on Law & Aging: Provides an online guide to finding legal services in each state, including lawyer referral, court information, state laws and legal rights.

http:/ / www.abanet.org/ aging/ home.html
To find legal help in your state, visit:
http:/ / www.abanet.org/ legalservices/ findlegalhelp/ home.cfm

Caring Connections: A program of the National Hospice and Palliative Care Organization that offers free resources and information (online and over the phone) about end-of-life care and services. Includes information about:
• Advance care planning
• Financial assistance
• Hospice care and grief

(800) 658-8898
http:/ / www.caringinfo.org

Disability and Business Technical Assistance Centers (DBTAC): Provides information, training and technical assistance and a free hotline on the Americans with Disabilities Act (ADA).

(800) 949-4232

http:/ / www.adata.org

Family and Medical Leave: The Family and Medical Leave Act (FMLA) is a federal law that allows employees to take up to 12 weeks of unpaid leave per year to care for themselves, or for a seriously ill family member, or for a new child without losing their jobs or health care insurance. Some states have additional benefits, such as paid family leave. Eligible workers must:
•  Work at companies with 50 or more employees at or within 75 miles of the work site
•  Have worked at least 1,250 hours during the 12-months prior to taking leaveWorkers can take leave to care for:
•  An ill spouse, child, or parent (some states include additional family members)
•  A new baby or adopted child
•  Themselves when they have a serious illness Department of Labor:
(866) 487-9243

http:/ / www.dol.gov/ esa/ whd/ fmla

National Partnership for Women and Families:

National Partnership for Women

LawHelp.org: Provides online directory of nonprofit legal services providers throughout the country. Anyone, with special attention on people living on low or moderate income.

http:/ / www.lawhelp.org

Legal Services Corporation (LSC): LSC, also called Legal Aid, is a government resource that provides legal assistance to low income Americans. The LSC provides an online listing of member organizations that provide free legal assistance to eligible clients.

Must be low income (income limits vary by program)

http:/ / www.lsc.gov

Medicare Rights Center: Nonprofit organization that provides direct assistance to people with questions or concerns about Medicare. Information is provided about Medicare drug coverage, health plan options, and rights and benefits. Assistance is available online or by a telephone hotline.

(800) 333-4114
http:/ / www.medicarerights.org

National Academy of Elder Law Attorneys (NAELA): Provides an online directory of its members to locate attorneys that deal with legal issues affecting elderly and disabled adults, including:
• Public benefits
• Probate and estate planning
• Guardianship and conservatorship
• Health and long-term care planning

http:/ / www.naela.com

National Association of County Veteran Service Officers (NACVSO): Provides assistance in obtaining veterans’ benefits and answers questions regarding rules and regulations concerning veterans.  Website provides directory of Veteran Service Officers across the country.

Family members of a veteran
http:/ / www.nacvso.org

National Center on Elder Abuse: Offers an online “State Resource Directory for Elder Abuse Prevention” which includes help lines and hotlines to report suspected elder abuse, neglect, or exploitation. Also includes state laws and regulations that protect older adults.

(202) 898-2586

http:/ / www.ncea.aoa.gov

National Citizens’ Coalition for Nursing Home Reform: Offers consumers, families and advocates resources and information on long-term care including; an overview of each state’s nursing home system and licensing agencies, and a consumer’s guide to choosing a nursing home. (202) 332-2276

http:/ / www.nursinghomeaction.com

National Long-Term Care Ombudsman Resource Center: An online resource that defines the role of a long-term care ombudsman and how he/she can help families of nursing home residents. It also includes a state-by-state directory of long-term care ombudsmen.   (202) 332-2275

http:/ / www.ltcombudsman.org

Patient Advocate Foundation: Provides mediation between patients and their employers and/or creditors to resolve insurance, job retention and/or debt crisis relating to the patient’s condition.

(800) 532-5274

http:/ / patientadvocate.org

WorkLife Law (WLL): WorkLife Law operates a hotline which provides legal assistance to caregivers who encounter discrimination in the workplace due to their family responsibilities. Services include:

•  Legal advice/assistance
•  Advocacy
•  Attorney referrals

(800) 981-9495

worklifelaw.org

worklifelaw.org/EmployeeHotline

I read an interesting post this week by Trisha Torrey. The post mentions a newspaper article which suggests one needed to be friendly in order to be a good patient advocate. If you read her post you will see that we disagree. Friendliness has nothing to do with it. Trisha and her friend, Bart Windrum both recommend being business-like. I have to agree.

As a nurse case manager, I have to advocate for patients every day. I have a staff that assist me and some seem to get more accomplished than others. I have found that it is all in the delivery. Just today a patient needed a $500 medication filled.  She went to the pharmacy of the medical center but was told they could not get her medication card to approve the medication.  She offered her health care card (this was inappropriate as the case is workers compensation).  She obviously could not afford to pay for the medication so she called for assistance.  The staff nurse made several calls and was able to get the pharmacy to agree to provide a two day supply of the medication and then transfer the prescription to her local pharmacy and let her work out the payment issues with her insurance adjuster.  After this arrangement was made, my nurse learned that the medication is specially compounded and would not be available at her local pharmacy.  The next suggestion was to leave without the medication and allow for another day or two in order to work out the payment arrangements and she could return to pick it up once approved.  My client lives a little more than an hour away from the medical center and is ill.  She should not be required to return simply to pick up her medication.

I listened to the complaints and then picked up the phone to make my own calls.  Now I was not privy to the calls of my staff nurse, but I do know what I did.  I was very direct and firm; respectful and business like in my delivery.  I offered suggestions and gave assurances.  I provided my personal contact information so that the person on the phone could look directly to me if something should go wrong.  He may have felt that I was giving him an out.  I certainly did not take no for an answer.  It took three phone calls and speaking to two separate individuals, but in the end my client received the medication, did not have to pay out of pocket, and did not have to make an unnecessary return trip.

Every day I deal with medical staff who are busy, often over worked and under paid.  Many don’t care and others care, but don’t give the effort that I need at the moment.  I t is my job to help them focus on my client’s needs.  When my staff act wishy-washy they reveal their lack of knowledge and therefore do not command respect.  Remember when dealing with complex issues,

• stand up straight
• give a firm handshake
• state the facts
• be direct and to the point
• do not embellish for effect
• Respect the providers time and efforts
• Remember to be gracious and appreciative