Friday, November 29, 2013

What's a Type A Continuing Care Retirement Community?

John and Eva had ongoing conversations about their home which was now far too big for their needs and lots of trouble and expense to repair and keep up.  John said, "It's the yard, the leaves, the painting, and general repair and replacement problems.  What's next to go?  The refrigerator or me?"  Eva was tired of shopping and cooking.  Her arthritis was slowing her down.  She told John, "OK, you retired from work, but when do I retire from cooking?"  Also, they were beginning to lose contemporaries and their social life was shrinking.  There was a growing sense of isolation.  Their children and grandchildren had busy lives and couldn't be part of their daily life.

The started looking around at Continuing Care Retirement Communities and found lots of options and a fair amount of confusion about what might be future costs.  They were leaning toward a "Type A" CCRC, but each of those had somewhat different costs, though they were much more inclusive than Type B or C, the latter being fee for service.

But the headaches were just starting.  They had raised four children who were now on their own, but the remnants of their possessions were still in their house along with "stuff" that they had inherited from prior generations.  John read an article about "possession paralysis" in the New York Times and shared it with Eva.  "It fits us doesn't it Eva.  We're both pack-rats and we have been putting off moving partially due to all the "stuff" we have."

So they began to downsize - trips to the library to donate books, trips to Goodwill to donate, giving things away to family, but this hardly made a dent.  "We have all this china, crystal, and silver but there's just no market except for the silver metal.  Don't kids entertain any more?"  The children began to step in with Craig's List, eBay, and hauling stuff out to their own homes and an estate sale.

They finally found the CCRC they were hoping for and it came time to do a pricey buy-in which was painful even though their estate would get 80% of it back.  The housing market was beginning to bounce back and it seemed like a good time to put their home on the market, get a "bridge loan" and plan a move.

Both John and Eva found the whole experience stressful, but couldn't see anyway around it except to continue on in their own home, and hire in help eventually if needed.  Eva said she was so emotionally attached to family things that "possession paralysis" felt very real to her.  Yet she didn't want to handle all the house issues if something happened to John.

It took about 6 months for the house to sell, the CCRC move to occur, and almost that long to dispossess themselves of all their "stuff".  Selections were finally made, charity trucks carted off many boxes, and the "kids" came with U-Haul trucks.

Eva remained in good heath, but within a year of moving into the CCRC, John developed rapid onset Alzheimer's.  He was moved to the Memory Care Unit, while Eva could stay in her independent apartment in the same complex.  She was able to participate in John's care without being overburdened by worry about safety or costs.  His long term care was fully covered and their were no additional expenses.

Comment:  We are on the cusp of having the Boomer Generation entering into the final phases of their lives.  The problems and expense will be huge.  Very few folks have long term care insurance and some still assume that Medicare covers long term care - it doesn't.  We aren't well prepared as a society to deal with these problems.

Monday, November 25, 2013

Why Is Hospice Often Delayed?

Les called me about his PSA.  "Jim, it's rising and now up to eleven and they're recommending treatment.  What would you do?"  Even as a long retired MD, I still get medical calls from friends and relatives.  Actually, I feel honored and try to do my best, researching the latest journal articles and editorial opinions.  Of course, the prostate cancer literature is cloudy at best with scant evidence that the huge number of surgeries are actually saving lives.  Most of us die with prostate cancer but not of prostate cancer.

Les went ahead with surgery which proved to be both difficult and non-curative.  The cancer was found to have spread into the pelvic lymph nodes, plus he went into a very rapid irregular heart rhythm requiring a stay in the ICU for a few days.  After that he was given radiation and hormone blocking drugs to try to stop the cancer.

Les seemed to stabilize and did reasonably well over the next four years, but then developed pain and fever in the left flank.  The CT scan showed that the kidney was obstructed by a tumor mass.  Looking in there with a scope, a small stent was passed up into the kidney to drain the pus, and a new cancer found in the area - most likely secondary to the radiation he received.

As Les become weaker the family rallied around.  Jeannie, his wife, and the three adult children and seven grandchildren were supportive.  Jeannie went with Les to the Oncologist who prescribed chemotherapy to "buy time", but again there were complications.  Les became weaker, lost all sense of taste and smell, and it was found he had a very low serum sodium level.  This required hospitalization, water restriction, and very expensive drugs.

About this time, Les said "NO MORE".  The treatments had devastating effects that weren't benefiting him.  Jeannie was providing all his care at home, a hospital bed and recliner were purchased, and part time help employed.  The doctors were "giving" Les about a year to live, but when I stopped by to see him, his skin was pale and clammy, his pulse 120, and he could barely stand up.  I asked Jeannie what she would do when the end came.  She said, "Well, I'm not going to call 911 because they would come in and do CPR and Les certainly doesn't want that."

As gently as I could, I recommended that Jeannie talk to her doctors about hospice and introduced her to the POLST form.  Her first reaction was that Les wasn't sick enough yet for the "6 month prognosis".

I responded, "Jeannie, why not just ask for a hospice evaluation and let them get to know him and evaluate his current status.  They are really great at this.  I gave her a Hospice brochure and a POLST form and suggested that she and Les discuss this with their doctors."

Fortunately Les was shortly thereafter on hospice with a signed "DNR" on his POLST form which would be honored by Medic I if called.  Extra help was provided and Jeannie began to get a little more sleep.  Les died a few weeks later with Jeannie and family at the bedside and the hospice nurse present.

Comment:  The stays in hospice remain far too short despite their amazing benefit to patients and families.  One surgeon said, "Dying without hospice would be like having surgery without anesthesia."  One cause of delay in hospice referral is the Medicare requirement that all curative attempts be stopped on entry into hospice.  Medicare has been delayed in initiating a trial to allow continuation of curative attempts while in Hospice.  It remains understandably hard to make the mental and emotional switch from the curative mode to the comfort measures only mode.  So we all need to work on this - the physicians, support groups, chaplains, families, and those involved with palliative care.  Many are unaware that their insurance plan may offer hospice benefits under the age of 65, and also pre-hospice benefits may be available for those wishing to continue curative efforts.

One of the newest specialties in medicine is Palliative Care - those who take a holistic view of the patient, focus on symptoms and comfort measures while taking into account all the variables like spiritual beliefs, other specialties involved, family dynamics, etc,  Long considered to have opposing views, Intensive Care and Palliative Care are finally coming together in the treatment of patients.

Spending my career presiding over many deaths in the ICU, I would have to be prepared to lose a patient after spending days and weeks trying to save the patient.  This requires a shift in thinking and intent - sometimes a huge adjustment for all involved.  Physicians and other care-givers need training and support to acquire palliative skills and this is being done (finally) at a number of institutions such as the University of Washington.  You can log on and become a member if you wish.

Monday, November 11, 2013

Helping A Patient Die - Death with Dignity

Recently at a conference, I invited others to consider posting their stories on this blog about end of life issues.  The following story is from a physician who volunteers with Compassion and Choices in Washington State.  About 1 in 500 deaths in Washington state (0.2%) occur by utilizing Washington's Death with Dignity law - passed by a 59% margin several years ago.  Oregon's similar law was also passed by a voter initiative, and Vermont's legislature recently passed a similar law.  Here is this physician's story:

"As a Client Services Volunteer for Compassion and Choices of WA, (C&C) it is my privilege to help a dying person in choosing his/her way of dying.

A few years ago I helped an incredible woman, 64, end her life.  She had gotten the diagnosis of lung cancer, unrelated to smoking, 4 years earlier.  In the midst of an active and successful career as a consultant for large companies seeking more effective Human Resources, she was stunned by this news.  She had some surgery, which relieved her difficulty with breathlessness, followed by chemotherapy.  The bouts of chemo were hard to tolerate for her as an always healthy, exercising, normal weight person.  But she got through them and enjoyed a remission of 2 years. 

A year later, recurrence was found in her lung, brain and liver.  Radiation and more chemo seemed to shrink these lesions, but her mental acuity was slowly decreasing.  She and her husband decided to pursue, via the Death with Dignity Law, an option to end life if she needed to do that.

Because she had obtained a prognosis or 6 months or less from her physician, she was eligible for that choice in WA. I was called when they contacted C&C, so I met with them in their condo.  We began the process specified by the Law. After another physician confirmed her diagnosis and prognosis, she also was found to be non-depressed and mentally competent to decide.  She completed the Written Request form and the waiting period.  Finally, she obtained the prescription from her personal physician.

She continued to work past her initial 6-month prognosis.  Then her strength forbid the traveling and exertion required.  They took the trip to Antarctica she had always wanted.  However, she again used her strength of character to get there.  Predicted bad weather caused the captain of their small ship to turn back toward the Cape of Good Hope, but she rallied the other passengers to demand that the captain check and recheck the weather.  A better forecast allowed them to proceed to Antarctica. 

She decided to set a time for death when she was unable to go outside for walks with her husband and she was getting more short-term memory loss, to the extent that she could not read books.  They got a rental hospital bed for the living room.  They invited close family and arranged a time with me.  On a weekend morning, after a light snowfall near Christmas the family spent time sharing memories and she took anti-nausea medications.  I arrived and mixed the powder with warm water.

She expressed her love for each person and her gratitude to me.  Holding her husband closely, she drank the small amount of liquid.  She chased the bitter taste with a favorite juice.  Her family gathered near her and held each other.  She quickly slept and died."  Posted by an MD.

Comment: Years ago I had a similar case where I was pretty sure that a patient with end stage mesothelioma was squirreling away sedatives and contemplating ending his life of suffering with an overdose.  He was suffocating as his lungs were being progressively compressed by tumor masses.  I presented his case to our Ethics Committee and was surprised that the Ethics Committee supported his autonomy even though it appeared to violate the "Do No Harm" ethical principle (and was against the law at that time).  In reality I think it could be argued than harm was being forced on this man by not giving him the help he wished.  At any rate I think he may have ended his own life with medications.  How often is this quietly done?  Probably much less often now that Hospice is widely available and a Medicare benefit.  JdeM

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