I have been thinking a lot about end of life planning. I recently started helping people with this aspect of their lives by acting as a healthcare power of attorney for those who need a non-family member in that role. And yes, I intentionally italicized "of their lives."
A good friend’s mother recently died at age 94; she was well loved by her family, and very well cared for despite living for many years disabled by a stroke. My friend and his family were able to be with her in an inpatient hospice setting, it was clear she did not want any extraordinary measures taken to prolong the inevitable, and they could sit and hold her hand as she passed. Sounds pretty ideal, right? And despite glitches along the way, it seems so.
As we were discussing it after her shiva (the Jewish period of 7 days of the acute phase of mourning—or less depending on your adherence to classic protocols), it occurred to me that there are 3 general death scenarios. The one above is the clear scenario that most of us envision as “a good death”.
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Another scenario is where a family member dies suddenly, unexpectedly, and the family and friends are left in shock, having had no time to process it before it happens. Interestingly, this is not necessarily a “bad death” for the deceased, but it certainly is hard for the family.
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The third general scenario is where some or all of the participants (including the “patient”) have not accepted that death is a part of life (thus the italics above). The hard discussions of what the person wants at the end of life, when they want to push on, when they want to call it quits, where they want to die, who they want with them—all of the factors that go into a “good death”—have not been discussed, or the family ignores the wishes and countermands them. Or worse, there is disagreement among family members about the treatment course.
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I cannot claim to have the lock on what a good death looks like to others, but I do know what can be done to lessen the stress felt by families going through this passage. In the first scenario, end of life wishes were known and discussed, and it was the end of a good long life. In the second scenario, there was likely no preparation, and nothing can mend the shock felt by the family except time. In the third scenario, there is a lot of preparation that could be done to prepare for and avoid conflict and stress.
This is why I advise everyone to have a healthcare power of attorney designated and an advance directive in place. We can make a death better for both the patient and the family if we confront this before it is needed. I have been through two of the three scenarios personally, and I vastly prefer the first one.
Even if you don’t have a serious or life threatening illness, or don’t have access to a healthcare advocate any time of the day or night, there are tactics you and your family can use to advocate for yourself or your loved ones. Using these tactics will make your healthcare go more smoothly, with fewer missteps and hopefully fewer errors and delays of needed care. And these are things anyone can do! You just need to be prepared. Here are 3 of the most important tips for advocating for yourself:
1. Have your important health information with you.
For most people this means having printed out your contact information, who to call in an emergency, your medical conditions, medications, and allergies. I have developed a Health Portfolio™ that has all this information in a loose leaf binder that is easy to carry with you, as well as a one page easily portable form that can be taken anywhere (contact me if you are interested in this service).
2. Make a list of questions for your doctor before you go to an appointment, and at the appointment, write down the answers.
This enables you to review what was said later, when you can think more clearly. You can then check with reliable sources to clarify, like a healthcare advocate, good internet sources, or the staff of your doctor’s office.
3. Have someone come with you and take notes.
I can’t stress how important this is if you are going to an appointment to get results of tests, especially biopsy results when you are concerned about cancer. Once you hear the results, if they are not what you were hoping for, most people do not hear a word! Their brain goes into that altered dream state where they are aware that someone is talking but have no idea what is being said. They are too involved in the movie in their head where everything is going badly. And its hard to take notes yourself when you are in that state.
4. If you use the Internet, look at reliable sites.
For instance, use the Mayo Clinic site, Uptodate, WebMD.
These tactics should help to insure that you have accurate information both to give to your doctor, and most importantly, that you get from your doctor. Having questions written down ahead of time means your concerns will be addressed, and having a friend or family member as a scribe makes sure that you have the information that was given to review.
Last month I talked about advocating for ourselves, whether or not we have a professional advocate with us. These were tactics dealing with gathering the information we care about at our medical appointments, and also giving complete and accurate information. Here are some tips to use once you have gathered the information, have been given an explanation of what is wrong, and hopefully some options for treatment. These are for the next step: getting the care for your medical problem.
1. Always ask, “What else could this be”?
Be sure your doctor has considered other options. In medicine we call this the differential diagnosis. Why have other options been ruled out? Why has this option been ruled in? Make sure you understand the thinking.
2. Never undergo a treatment unless you understand what it is, why it’s needed, and what the alternatives are. This is the corollary to number one above, but is critical if you are going to have a treatment such as surgery, or even a minor procedure. If you don’t feel convinced you need that treatment, hold off until you do or decide on a different modality.
3. When you are in the hospital, make sure everyone who enters your room washes their hands.
I mean everyone! No exceptions! It is okay to ask, and to demand this. Almost every hospital in America has a plan for 100% compliance with this. Think of yourself as just helping them achieve their goal. And improving your safety at the same time. A win-win.
4. If you are feeling uncomfortable, uncared for, not listened to, and talking about it doesn’t resolve these feelings, change doctors.
Yes, really. It is okay to change. It happens to all of us. You are far more important than the concern you might hurt your doctor’s feelings.
5. Be assertive (see 1-4 above).
6. Trust your gut.
This one comes with a caveat—sometimes your instinct is not accurate, its really fear rearing its ugly head. But if you think something is not right, trust yourself. Don’t go along with it if it doesn’t feel right (see number 5 above).
I hope these tactics help you get the most responsive and best and safest healthcare for you and your family members. Let me know if you have questions or comments.
Dr. Sima Kahn muses on being a healthcare advocate, the troubles with our healthcare system, and how to advocate for ourselves.