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End-of-life medical decisions are some of the most difficult we all will make — for ourselves and for the people we love. There are practical and emotional challenges to navigate. A panel of experts from Sharp HealthCare helps* us do that.

 

*Responses are intended as guidance, not legal or medical advice.

Please pose your question using the form below. All questions must be accompanied by name, city of residence, email address and phone number only for our use in contacting you. You will be identified by first and last initial and home town.

Questions will be summarized if necessary.

Responses are intended as guidance, not legal or medical advice.

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What is Medi-Cal or MediCare doing about continuing to pay for hopeless care? Are families who demand this care paying for any part of it?

Although care is never hopeless, some medical treatments cannot deliver what patients and families hope for, and may actually be harmful. Open discussion between clinicians and patients of non-beneficial treatment often occurs late in the disease process and during a medical crisis. Moving the discussion earlier in an illness trajectory requires a culture change in American healthcare. Ample research exists to support patients’ wishes to discuss treatment for end of life care but support for reimbursement for physicians to do so must also be in place. Although the majority of Americans polled support such discussions between patients and physicians, political debates and misinformation have bogged down previous attempts at legislation. A number of national non-profit healthcare and community action groups are lobbying the U.S. House and Senate to promote legislation to improve end of life care. Without legislation, reimbursement cannot occur.

In California, there is an Assembly bill (AB 2139) currently in debate that would require physicians to inform patients with a terminal illness of their options to information and counseling regarding end of life care. This mandate would need to be incorporated into the Medi-Cal reimbursement system so if passed, would be at least a year away. Another bill in the Senate (SB 1004) would require Medi-Cal to develop a pilot palliative care project for adults to determine if such a benefit should be offered routinely under Medi-Cal. Citizens can support either of these bills by contacting their Congress representatives. Contact information can be found by clicking on this link: http://findyourrep.legislature.ca.gov/ . Many hospices in California have added palliative care programs to support patients and families with advanced disease and these programs are funded through contracts with insurance companies, rather than traditional billing mechanisms.

Finally, it is the responsibility of both clinician and consumer to collectively share information in order to make sound healthcare decisions so that unwanted care can be avoided. Clinicians must not offer care that will not produce the desired result, and must discuss quality of life considerations with patients and families. Patients and families must use that information to consider how quality and quantity of life is valued, and perhaps, one day be prepared to pay for care that is beyond what is recommended.

Caroline Etlund, clinical nurse specialist

If someone has signed an Advance Directive, can a family member disregard it?

If the family member is named as the agent on the Advance Healthcare Directive (AHCD), it is expected that he or she will make decisions that are in line with the known wishes of the loved one. Does that always happen? No, sometimes people make decisions that seem to be in conflict with the AHCD. If they believe that their loved one would have a different goal of care because of changes in medical condition, it may be reasonable to change the treatment plan. But they should definitely not disregard the contents of the AHCD and go against the wishes they believe their loved one would have held.

This question emphasizes two important points: First, it is essential to designate the right person (or people) to serve as your agent — someone you know will serve as your advocate in getting you the care you want to get, and being sure you don’t get care that you wouldn’t want to get. Second, be sure you revisit and revise your AHCD periodically, especially if you have chosen “choice to prolong life” and your medical condition becomes more serious or progressive. Most people with serious or terminal conditions do not benefit from very aggressive interventions like CPR, and they can do a lot more harm than good. Talk to your doctor if you have questions about this, and if you do have serious medical problems or conditions, or if you have strong feelings about what kinds of treatments you want or don’t want, complete a POLST (Physician Orders for Life Sustaining Treatment) form with your doctor.

Karl E. Steinberg, MD

The Experts:

Dr. Karl Steinberg

Dr. Steinberg is a board certified family physician and hospice & palliative care physician who serves as Chief Medical Officer for Shea Family Health, including several of their skilled nursing facilities, and medical director of Kindred Village Square and Life Care Center of Vista.  He has been medical director for Hospice by the Sea in Solana Beach since 1995 and is Chair-Elect of the Compassionate Care Coalition of California.

Dr. Margaret Elizondo

Dr. Elizondo is a forward-thinking physician who serves as Associate Medical Director at Sharp HospiceCare.  She is open to opportunities to improve patient care at the end of life. Specialties: Board-certified in Hospice and Palliative Care Medicine in addition to Family Medicine.  Dr. Elizondo serves as the chair of the Bioethics Committee at Sharp Grossmont Hospital.

John Tastad

John Tastad is the Program Coordinator for the Advance Care Planning program at Sharp HealthCare.  John has served as a Spiritual Care Counselor at Sharp HospiceCare, and teaches Bioethics for new employee and volunteer training at Sharp HospiceCare.  John received Advance Care Planning Instructor Certification at Respecting Choices, a program of the Gunderson Health System.

Scott Mann

Scott has been a practicing attorney, first in Massachusetts and then in California, since graduating William & Mary School of Law in 1997.  He has been with Sharp HealthCare, in San Diego, since 2002, where his work focuses on the regulatory and risk management guidance applicable to health care providers and health care institutions.

Caroline Etland

Caroline Etland has worked as a Clinical Nurse Specialist with many cancer patients and others experiencing advanced chronic illness for the last three decades. She is familiar with the decisions patients and families face as illness progresses, and how difficult choosing the right path can be.

As the Director of Education and Research at Sharp Chula Vista Medical Center, Caroline is able to promote excellent patient care and education for those experiencing life-limiting illness, and to assist families in accessing resources to help their loved ones.