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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”.

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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.

Don't Wait:  Now's the time to discuss end-of-life-care
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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.
 
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!


Happy holidays to all of you!

This is a good time of year to look back at the year and do a survey of how well we are accomplishing our goals. I’ve been thinking about how to spread the word about healthcare advocacy, and this story struck me as a case in point.

Recently a colleague and friend said to me that she had thought about calling me (as a healthcare advocate) when her son had been very ill. He was much better now, but the family had gone through a very difficult and scary time.   I wondered what had made her hesitate while they were going through the health crisis. We met for lunch recently, and she told me the story. Here it is with many identifiers changed, and I’ve included my comments in italics where a healthcare advocate would have helped.

This 22-year-old male’s past medical history is significant only for migraines, he has been active in sports and has been routinely healthy.

He joined a fraternity in college and then moved into a house with friends where he began to have respiratory illnesses, and his health began to deteriorate. The house, which his mother describes as a dump (I thought that the house my son lived in his fourth year of university should be burned down when they moved out), was subsequently found to have black mold. He developed gastric ulcers that eventually bled and he was treated according to the appropriate protocol.

In December of 2014, he called his mother during a particularly bad respiratory infection to “come get me”.  She did, and he was found to have pneumonia.  Due to his illness he had to take an extra semester to graduate, but he recovered at home with appropriate medical care and finished school in March of 2015.

In October of 2015,  his family noted that he was becoming more and more irritable, and he began to have more and more fatigue.  (I should add here: this would not necessarily trigger a call to an advocate, but it would have been a good time for him to see his primary care doctor). Within 2 months he was sleeping more and more and eating less and less (again, see your doctor! This is not normal!).  

In January of 2016 he noticed blood in his urine. Was this a urinary tract infection? He saw a urologist, who also ordered a CAT scan, which was normal. The possibility that he had passed a kidney stone was considered, although the symptoms were not particularly characteristic for that, and my friend’s son did not think that it was likely.

A week later his nausea, irritability, and fatigue had markedly increased. He saw a nephrologist at his medical clinic, who wondered if it was a virus. A creatinine was checked (this measures kidney function) and it was found to be 3.5 (abnormally high, especially for a young person). He was scheduled to have a scope of his bladder, but that was cancelled due to respiratory symptoms (asthma?). The next day, when he saw his urologist his creatinine was 5.5 (even worse! And rapidly worsening!)  It was clear that something was going on that needed to be addressed urgently, and he was admitted to the hospital—and put on the oncology floor!

Here is the first point where a healthcare advocate would have been helpful. The family felt lost in space. And he was on an oncology floor! An advocate could have helped with the communication between the medical team and the family, and explained that this did not mean he had cancer. At a time like this, someone who can keep track of all the pieces of information and relay them calmly to a very distressed patient and family can be priceless.

He proceeded quickly to a diagnostic workup that led to the diagnosis of a rare autoimmune syndrome that attacks the kidneys.  As a kidney biopsy confirmed this, his creatinine climbed close to 7, and his blood pressure increased.  The doctors immediately began treatment with plasmapharesis (a method of removing blood from the body, separating the components, and reinfusing the cells but not the plasma--a way of getting rid of unwanted antibodies). They also treated him with prednisone, as well as an oral chemotherapeutic agent. He was told that 50% of his kidney tissue had been affected by the immune complexes. He believed, wrongly, that he was destined for a kidney transplant, and soon.

Next place for an advocate to intervene: not all medical providers communicate well with patients, and making sure the patient and family have a realistic idea of what could lie ahead is important. The emotional distress that this misinformation caused was significant, and entirely unnecessary.

He continued to have daily plasmapharesis for 4 weeks; his hospital stay was complicated by the development of a blood clot in his arm that required IV anticoagulation (overtreatment led to him bleeding from everywhere but dissolved the clot very rapidly), and a bout of hospital acquired pneumonia after about 2 weeks was treated with IV and oral antibiotics.

One of his doctors took his pathology slides to a conference because it was so unusual. He was discharged after a 4-week hospital stay on 20 different medications. His creatinine is now around 1.5.

What went well?

  • Relatively rapid diagnosis after hospitalization, and appropriate treatment, with improvement in his condition.

What went not so well?

  • One nephrologist told him he would need a kidney transplant in a year.

  • Lack of mental health consultation

  • A different nephrologist every week for all 4 weeks he was hospitalized

  • No support groups

A healthcare advocate would have been able to work with the system and the patient to be sure he had some mental health consultation during the hospital stay. In addition, the family needed some support, and this also could have been facilitated. In addition, if the nephrologist is going to change weekly, the healthcare advocate can be the continuity to be sure all sides are hearing each other.

Now: He is recovering at home, rides his motorcycle, and doing much better. He is off of chemo and has weaned down his prednisone. He has gotten much feistier (he doesn’t want his mom going to doctor appointments with him). But he went through a significant period of depression, and was even suicidal. He is on an antidepressant, which helps. He still feels under the influence of “chemo brain”, but this is slowly improving.  And he is experiencing what sounds to me like PTSD.

A healthcare advocate would stay involved after discharge from the hospital, and perhaps could have hastened treatment for the depression, as well as help find resources to treat PTSD.

As my friend said, a healthcare advocate is like a SWAT team that can swoop in and make sure everything that needs attention gets attention.

My friend’s son had a fairly rapid diagnosis, good medical care, and is doing much better. Even so, the journey could have been so much less painful, scary, and a much smoother ride with an advocate.

A healthy new year to all!