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Posted by on in Current Medical Issues

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I am something of a zealot for extolling the values of community and the need for personal connection. In my work as a healthcare advocate, I find myself urging new or established advocates to join the organizations for advocacy and to attend the conferences. I belong to 3 such organizations: National Association of Healthcare Advocacy ConsultantsWashington State Health Advocacy Association, and the Alliance of Professional Health Advocates.  It is worth every penny!

Why? Talking to your peers is invaluable in any profession, and in our line of work,  there aren’t all that many of us. We get support, validation, and knowledge about our field when we meet and network with each other.  This newsletter is about having a support network, building community, and more. It is about improving the quality of care for our clients, smoothing transitions, and getting business at the same time.

I have wonderful advocacy colleagues around the country, but was recently reminded of the value of connection because of a circumstance with a fellow advocate and her client.  My colleague, Dianne Savastano, is the founder and principal of Healthassist a healthcare advocacy firm based in Massachusetts. Dianne had worked with a member of a family on the east coast. When the father, who was living in Seattle at the time, began having health issues that were not resolving, the family asked Dianne if she had anyone in Seattle like her. She readily said that she did, and I was promptly connected to the father in Seattle.

This began a very pleasant and rewarding several months working with my client, whose goal stated at the outset was to move back to the east coast (besides resolving his health issues). We were able to make tremendous headway on the health issues, and only had to delay his move once.

And of course, Dianne and her associate, Anne Jacoby, sprang into action to make the move a carefully thought out and smooth transition, putting all the pieces into place on the east coast. This is the ultimate in coordination of care. I can completely relax knowing he is in the best of hands. Not to mention giving a shout out to his wonderful family both here in Seattle and on the east coast; they are the ultimate community and make it all possible!

This has been such a good example of the value of connection and the reason for community building that I will continue to promote it.  I will do whatever I can to give the best service to all of my clients, while continuing to network and connect with my fellow advocates.  As Helen Keller once said, ”We cannot accomplish all that we need to do without working together.”

Best of Health,

Sima Kahn, MD
Founder, Healthcare Advocacy Partners

Posted by on in Current Medical Issues

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”.

Putting in Place An A-Team of Allies
by Judith Graham

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.

Don't Wait:  Now's the time to discuss end-of-life-care
by Robert Powell

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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by Debbie Reslock

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.
 
Best of Health,
 
Sima Kahn, MD
Founder, Healthcare Advocacy Partners

Posted by on in Current Medical Issues

As spring has arrived, I have been immersed in something that involves the end of things rather than the beginning. Recently, I started a new service helping people plan for what they want at the end of their lives (i.e. helping them figure out what they want in their advance directive), while also serving as the healthcare power of attorney for those who do not have or do not want a family member to do so.

Writing this newsletter was spurred by an article I read recently by an attorney—no longer practicing—who holds the position that lawyers have no business in the field of advance care planning.

Lawyers have no business in the field of advance care planning

by Phyllis Coletta

The author of the article, Phyllis Coletta, says:

Here’s what happens when a lawyer gets involved in advance care planning: They tell you to appoint a health care agent, but don’t stress that you must talk to that person and all other loved ones about your values and range of decisions.  

And:

My ER doc friends tell me there is no document that comes close to the help of a well-informed family at the bedside.

I often tell people that I thought my family was the norm in terms of advance care planning. (Why I thought this was the case is a mystery to me!) My parents had a very thorough advance directive, which we all had copies of, and we all knew who the agents in charge were. When crises occurred, we could read the document to figure out what each parent wanted for their care. Further, my siblings and I are very close to each other and would talk frequently to ensure their needs were being met. Also, my parents had arranged for themselves financially, which reduced the burden on us as their children.

When I began researching this kind of work, I was surprised by what I found. I was astonished that potential clients did not realize that I needed to spend quite a few hours with them to get to know them, and what they would like to happen if they are unable to speak for themselves. In fact, I tell them that I am channeling them, so it is important to know who I am channeling! Isn’t that what we all want—someone who will carry out our wishes as close to what we would do for ourselves as possible?

What have I found instead?

  • An elderly couple who have designated their 3 children to have equal status for decision making, and who expect them to vote if they disagree and have the decision made by majority rule. Red flags right and left. Don’t do this, anyone.

  • A family who rewrote the document delineating desire or not for CPR so it would be construed by the hospital as: resuscitate me if I am dead (Cardiac arrest) but don’t do anything if I am alive and failing, toward the point where I need an intervention.

Both of these situations are due to lack of spending the time in a nonconfrontational way to explain, explore, and figure it out with those who you love or have entrusted with your care.

I want to leave you with some really great resources for figuring out your or your family’s end of life decisions.

5 wishes

https://www.agingwithdignity.org/

gyst.com

https://www.gyst.com/

death over dinner

http://deathoverdinner.org/

the conversation project

http://theconversationproject.org/

This is a conversation that does not need to be painful, sad, or morbid. It can create connection, and avoid a lot of pain in the end!