Daily Archives: May 20, 2015

05.20.15
by

Facing Death But Fighting The Aid-In-Dying Movement

Stephanie Packer was 29 when she found out she has a terminal lung disease.

It’s the same age as Brittany Maynard, who last year was diagnosed with terminal brain cancer. Maynard, of northern California, opted to end her life via physician-assisted suicide in Oregon last fall.  Maynard’s quest for control over the end of her life continues to galvanize the “aid-in-dying” movement nationwide, with legislation pending in California and a dozen other states.

But unlike Maynard, Packer says physician-assisted suicide will never be an option for her.

“Wanting the pain to stop, wanting the humiliating side effects to go away – that’s absolutely natural,” Packer says. “I absolutely have been there, and I still get there some days. But I don’t get to that point of wanting to end it all, because I have been given the tools to understand that today is a horrible day, but tomorrow doesn’t have to be.”

A recent spring afternoon in Packer’s kitchen is a good day, as she prepares lunch with her four children.

“Do you want to help?” she asks the eager crowd of siblings gathered tightly around her at the stovetop.

“Yeah!” yells 5-year-old Savannah.

“I do!” says Jacob, 8.

Managing four kids as each vies for the chance to help make chicken salad sandwiches can be trying. But for Packer, these are the moments she cherishes.

Diagnosis and pain

In 2012, after suffering a series of debilitating lung infections, she went to a doctor who diagnosed her with scleroderma.  The autoimmune disease causes hardening of the skin and, in about a third of cases, other organs. The doctor told Packer that it had settled in her lungs.

“And I said, ‘OK, what does this mean for me?’” she recalls. “And he said, ‘Well, with this condition…you have about three years left to live.’”

Initially, Packer recalls, the news was just too overwhelming to talk about with anyone –including her husband.

“So we just…carried on,” she says. “And it took us about a month before my husband and I started discussing (the diagnosis). I think we both needed to process it separately and figure out what that really meant.”

Packer, 32, is on oxygen full time and takes a slew of medications.

She says she has been diagnosed with a series of conditions linked to or associated with scleroderma, including the auto-immune disease, lupus, and gastroparesis, a disorder that interferes with proper digestion.

Packer’s various maladies have her in constant, sometimes excruciating pain, she says, noting that she also can’t digest food properly and is always “extremely fatigued.”

Some days are good. Others are consumed by low energy and pain that only sleep can relieve.

“For my kids, I need to be able to control the pain because that’s what concerns them the most,” she adds.

Faith and fear

Packer and her husband Brian, 36, are devout Catholics. They agree with their church that doctors should never hasten death.

“We’re a faith-based family,” he says. “God put us here on earth and only God can take us away. And he has a master plan for us, and if suffering is part of that plan, which it seems to be, then so be it.”

They also believe if the California bill on physician-assisted suicide, SB 128,  passes, it would create the potential for abuse. Pressure to end one’s life, they fear, could become a dangerous norm, especially in a world defined by high-cost medical care.

“Death can be beautiful”

Instead of fatal medication, Stephanie says she hopes other terminally ill people consider existing palliative medicine and hospice care.

“Death can be beautiful and peaceful,” she says. “It’s a natural process that should be allowed to happen on its own.”

Stephanie’s illness has also forced the Packers to  make significant changes. Brian has traded his full-time job at a lumber company for that of weekend handyman work at the family church. The schedule shift allows him to act as primary caregiver to Stephanie and the children. But the reduction in income forced the family of six to downsize to a two-bedroom apartment it shares with a dog and two pet geckos.

Even so, Brian says, life is good.

“I have four beautiful children. I get to spend so much more time with them than most head of households,” he says. “I get to spend more time with my wife than most husbands do.”

And it’s that kind of support  from family, friends and those in her community  that Stephanie says keeps her living in gratitude, even as she struggles with the realization that she will not be there to see her children grow up.

“I know eventually that my lungs are going to give out, which will make my heart give out, and  I know that’s going to happen sooner than I would like — sooner than my family would like,” she says. “But I’m not making that my focus. My focus is today.”

Stephanie says she is hoping for a double-lung transplant, which could give her a few more years. In the meantime, next month marks three years since her doctor gave her three years to live.

So every day, she says, is a blessing.

This story is part of a reporting partnership that includes Southern California Public Radio, NPR and Kaiser Health News.

Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation.

05.20.15
by

Practice Alert: Should nurses be filling the Pyxis?

Mat Keller headshot`

By Mathew Keller RN JD, MNA Nurse Practice & Policy Specialist

In a cost-cutting move, many Minnesota hospitals are asking registered nurses to take on more pharmacy duties. Where there may have once been pharmacy staff available 24/7 to answer questions, compound pharmaceuticals, and dispense medications, many nurses are finding that such coverage is now limited to 9-5 with an outsourced pharmacist in another city (or state) available by telephone after hours to answer questions and certify prescriptions. This can lead to potentially dangerous situations for patients as well as nurses’ licenses when nurses are asked to dispense and/or compound medications in the absence of a pharmacist.

One disturbing trend we are tracking is nurses being asked to fill the Pyxis or other automatic dispensing machine on the overnight shift. Non-pharmacy staff filling a Pyxis is unacceptable pharmaceutical practice. Furthermore, it is outside the scope of RN practice.

Under state law, only pharmacists are legally qualified to dispense medications, although they may be assisted in the task by up to two pharmacy technicians at one time.[1] Dispensing is defined as “delivering one or more doses of a drug for subsequent administration to, or use by a patient.”[2] When a nurse fills a Pyxis or other automatic dispensing machine, that nurse is delivering doses of drugs for subsequent administration to a patient.

While nurses may legally administer medications, they may not legally dispense them. Filling a Pyxis is outside the scope of RN practice and can lead to discipline against one’s nursing license as well as charges of practicing pharmacy without a license. In addition to scope and licensure issues, a nurse who fills a Pyxis assumes legal liability for any and all errors or patient harm resulting from improper dispensation (e.g. putting the incorrect medication in a Pyxis drawer).

Another common issue involves nurses being asked to mix IV medications in the absence of pharmacy coverage. The propriety of this practice is situationally dependent: reconstituting medications is acceptable nursing practice; compounding medications is not. Compounding is defined as mixing, packaging, and labeling a drug for an identified individual patient’s use.[3] The determining factor in whether or not you are compounding medications is whether the medication is for immediate use or not.  If a medication is being mixed for immediate use, it is acceptable reconstitution.  If the medication is being mixed for storage and later use, it is unacceptable compounding.

Lastly, many nurses are being given pharmacy access for after-hours care.  Under Minnesota rules[4], after-hours nurse access to the pharmacy should fulfill the following guidelines:

  • Withdrawal of medications must be limited to “emergency” situations, interpreted broadly by the Board of Pharmacy to include any time a necessary medication is needed but unavailable;
  •  Only one designated RN on a given shift may have emergency access;
  • The standard of practice is that narcotic access is limited to a locked narcotic drawer with a small supply of available medications, not full access to the narcotics safe;
  • The designated RN must properly document medications removed from the pharmacy;
  • The designated RN should have proper training from the pharmacy staff in pharmacy policies and procedures, as well as specific training regarding after-hours access.

MNA has and will continue to work with the Minnesota Board of Pharmacy in order to ensure that our patients are protected through proper pharmaceutical and nursing practice. Have you been asked to fill a Pyxis or compound medications? Please let us know at Mathew.keller@mnnurses.org.

[1] MN Statute §151.01 Subd. 27 (2)
[2] MN Rule 6800.7100
[3] MN Statute §151.01 Subd. 35
[4] MN Rule 6800.7530