Getting Loved Ones the End-of-life Care They Deserve

Q. My mother is in her 80’s and has been in the hospital several times this year with pneumonia and urinary tract infections and has been suffering with Parkinson’s for decades. There have been times when I’ve visited her and a doctor hadn’t been in in a couple of days, other times when she is passed out from a sedative they gave her when there was probably no need for one, and still other times where they are suggesting surgeries that I don’t even think she’d survive in her weakened condition (I’m not a doctor myself, but anyone who sees my mother can tell she is very ill).

I recently read an article by a Harvard-educated physician whose father was in his 90’s and also very ill. In his situation, other doctors at the hospital were suggesting surgery for his father, although similar to my mother, he likely would not have made it through. Even Dr. Emanuel had a difficult time advocating for his father and thwarting the medical system’s costly, unnecessary, and unwanted interventions. It got so bad that he had to unplug his father and take him home. If he couldn’t advocate for his loved one at the hospital, how can an average Joe like me be successful? How can I get my mother the end-of-life care she desires and deserves?

A. I am sorry to hear about your mother’s situation. In the article you referred to, which appears in a recent issue of The Atlantic, Dr. Ezekiel Emanuel, a Harvard-educated physician, bioethicist, and Vice Provost at the University of Pennsylvania (my alma mater), explains how “(o)rdering up more tests and surgeries for dying patients is easy; getting patients the end-of-life care they deserve takes much more effort.”

On a Saturday night a few months ago, following a fall, Dr. Emanuel’s father, Benjamin, was rushed to the hospital. The emergency room physician ordered a CT scan and an MRI, which confirmed that Benjamin had a large brain tumor. A cloudy chest X-ray gave the physician reason to suspect pneumonia, as well, so Benjamin was admitted to the hospital.

Dr. Emanuel traveled to Chicago to be with his father. The hospital was aware that Benjamin had a large brain tumor that could not be cured and would end his life, and this could not be changed. Dr. Emanuel knew that biopsying or removing part of such a big tumor, as suggested, would only worsen his father’s quality of life. He also knew his father would not have wanted any brain surgery, especially if there was no chance of a cure.

What troubled Dr. Emanuel was how no one at the hospital had taken the time to ask his father about his wishes regarding medical treatment, even though he was perfectly competent to make decisions and he, himself, was a physician. No one asked Dr. Emanuel’s mother or brother, who were with him in the emergency room and at the hospital, if he had an advance medical directive or wanted to have a do-not-resuscitate order.

Dr. Emanuel believes that once his father was admitted to the hospital, it took all of his expertise and experience to arrange the kind of care his father needed—and prevent the medical system from taking over and prescribing unnecessary interventions. In the end, Dr. Emanuel was forced to take drastic measures, including disconnecting his father and asking the physician to discharge him as soon as possible.

Benjamin avoided further trips to the hospital, an ICU admission, and more antibiotics and machines and was able to say goodbye to his loved ones as he had wished. Based on the experience, Dr. Emanuel is dismayed about how it is easier for the medical system to opt for costly interventions but harder, if not impossible, to accept the inevitable and provide symptom management, grief counseling, and proper end-of-life care to patients and their families.

Doctors Aren’t Always Listening

A recent study found that patients speak for an average of only 12 seconds before being interrupted by resident physicians. And when doctors don’t hear the concerns of patients or their loved ones, it can have a significant impact on care. According to Joe Kiani, founder of the Patient Safety Movement, one simple, proven way to reduce preventable patient deaths is patient and family involvement in their care. But, how can you get the doctor to listen?

What You Can Do

As a patient, or a patient’s advocate, you are not powerless when it comes to effective communication with the doctor while in the hospital and after you leave. There are things you can do to ensure your voice is heard and your concerns are addressed:

1. Come prepared.

Know what you intend to talk about before the doctor arrives. Write down your concerns and questions and make them specific. Consult with your loved one if he or she is still competent to provide input.

2. Prioritize your concerns.

Know that the doctor may not have time to answer all 50 of your questions, so ask them in order of importance. Knowing what the most important thing is that you want the doctor to hear is key. Staying focused on what you want to say and what you need to know about, rather than getting sidetracked, is important.

3. Be willing to communicate outside the exam room.

There are ways for patients, loved ones, and doctors to connect, if needed, outside the office via email and text.

Electronic means such as email or communication through a patient portal are particularly useful when a face-to-face meeting has already occurred and you have questions about what was discussed, or about treatment instructions.

You should also request to see the doctor’s notes if you don’t already have access to those. Stay informed, don’t be afraid to provide feedback as needed and make sure what’s communicated face-to-face reflects what’s going on with your loved one’s health.

4. Make sure your loved one’s wishes are respected and accessible. Make sure you are aware of what types of care your loved one does and does not want to undergo in case of a serious illness or injury. For example, would he or she want to be put on a ventilator or feeding tube and, if so, under what circumstances? Does he or she have a do not resuscitate order?

At the Farr Law Firm, your documents ARE ALWAYS accessible with Docubank. We provide the DocuBank service to ensure that that your Advance Medical Directive and other healthcare documents you’ve completed through our firm will be easily accessible when you need them most, such as when you are hospitalized.

DocuBank is an electronic storage and access service for healthcare directives and other vital health information, such as allergies, medications, blood type, and a list of your physicians. DocuBank stores all of your health information so it is available whenever needed. Read more about Docubank here.

5. Ask about end-of-life care. Are you considering hospice care for a loved one at the end of her or her life? Be prepared to ask questions about what is involved. Hospice care can habe advantages, depending on the needs and wishes of your loved one, but hospice can have disadvantages as well. Please read more in my article, “The Ugly Side of Hospice” for more details.

Did you know that if hospice care is right for your loved one, it can be rendered either at home or in a nursing home setting, and the matter might be the preferred place? Unlike with hospice care provided at home, nursing homes are staffed with nurses and doctors 24/7, making them (in some cases) a better choice for a loved one’s long-term care needs and end-of-life needs, and hospice care can just as easily be provided in the nursing home as it can at home.

Many nursing homes have a contract with one specific hospice provider, so if you have a loved one in a nursing home, you might not have a choice in picking a hospice provider. However, you know that if you’re in a nursing home, you’re not going to be left without care at end-of-life even if the hospice provider fails to show up. Receiving hospice care at a dedicated hospice facility can also be a very good choice; the problem is that there are very few dedicated hospice facilities around the country. Please read more in my article, “Is Hospice Care Free-of-Charge?”

Get Your Advance Directive and Other Documents in Place

Want to make sure you are prepared in case you or a loved one becomes incapacitated or faces end-of-life decisions, and that he or she gets the end-of-life care that’s desired and deserved? Once you have taken the step of speaking with your loved ones about your wishes, it is important to develop incapacity planning documents, including an Advance Medical Directive (with our proprietary Long-term Care Directive®), to make your wishes known. If you or a loved one has not done Incapacity Planning, Long-Term Care Planning, or Estate Planning (or had your Planning documents reviewed in the past several years), now is a good time to plan and get prepared. Call us to make an appointment for an initial consultation:

Elder Law Attorney Fairfax: 703-691-1888
Elder Law Attorney Fredericksburg: 540-479-1435
Elder Law Attorney Rockville: 301-519-8041
Elder Law Attorney DC: 202-587-2797

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About Evan H Farr, CELA, CAP

Evan H. Farr is a 4-time Best-Selling author in the field of Elder Law and Estate Planning. In addition to being one of approximately 500 Certified Elder Law Attorneys in the Country, Evan is one of approximately 100 members of the Council of Advanced Practitioners of the National Academy of Elder Law Attorneys and is a Charter Member of the Academy of Special Needs Planners.

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