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Week Fourteen 4/19/15 to 4/25/15 Strategies for Increasing Consumer Participation in the Policy Process.


Policy Process

Hello! Welcome back to this week’s discussion on the policy process and how to increase consumer participation. All the way back in Week Four we discussed how policies ensured that people’s basic needs and rights are being met (e.g., health, education, and safety).

People reading this blog may sit back and wonder how death with dignity fits into this explanation? In the past 14 weeks this discussion on Death with Dignity was meant to not only provide information, but to (possibly) get interested parties involved in supporting a bill in Arizona.


Consumer Participation

Policy making should involve consumers, but why? The obvious answer is that consumers should be considered major stakeholders; and have input on expectations, needs, and preferences (Pask, 2011). The World Health Organization (WHO) mentions how consumers play a central role for healthcare quality and safety (2015). For change to occur in healthcare, it takes vast community education, consumer advocacy, and constructive debates (Palmer and Short, 2000).

In Arizona, there is nothing on the horizon for a Death with Dignity bill. With the help from advocacy groups like Compassion & Choices or Death with Dignity National Center the message will continue to spread across the United States.

For those interested parties there is a petition (found on for Arizonans to sign who support a death in dignity. The goal is 200 signatures to be delivered to the Arizona State House, the Arizona State Senate, and Governor Doug Ducey (, 2015). There is also a local chapter of Compassion & Choices in Arizona; and a meeting is scheduled on March 28, 2015 in Tucson with guest speaker, State Senator Steve Farley (D), to discuss the introduction of a new aid in dying bill (Compassion & Choices Arizona, 2015).

Final Thoughts…A Wrap-Up

Since this is the last week of the dignity discussion, I wanted to end with an news story  I read in the Denver Post. It was a discussion about the Death with Dignity movement in Colorado (CO); and an interesting statistic about how 80% of people agreed with an aid in dying, but when asked if it should be enacted into a law that number dropped to 45% (Denver Post, 2015). It appears strange that in conversation people say they agree terminally- ill people should have the right to choose how they die, but won’t support a bill. Is is because this subject matter is an ethical dilemma for most?

I want to hear from the you…the consumer.

Thank you for all your comments; and remember you have a voice!


Compassion & Choices Arizona (2015). About us. Retrieved from

Denver Post (2015). Lamm: Death with dignity: A new civil rights movement. Retrieved from

MoveOn.Org (2015). Arizona death with dignity act. Retrieved from

Palmer, G.R. & Short, S.D. (2000). Health care and public policy: An Australian analysis. South Yarra, AU: Macmillian Publishers Australia.

Pask, Robert (2011). Getting the whole picture-consumer participation in health policy. Journal of the Health Forum in Australia, 9(1), 1-2.

World Health Organization (2015). Patients have a voice to! Retrieved from


Week Thirteen 4/12/15 to 4/18/15 Sustaining Innovative Environments: Considerations of Time and Scope.

Brazil Rio+20

Sustainability and Innovative Environments

We talked about innovators and change agents in past weeks, so let’s discuss sustainability. Sustainability builds and maintains the conditions to ensure human health and the environment is protected; and living in productive harmony (United States Environmental Protection Agency (EPA), n.d.). This definition comes from the EPA, but the concept still applies to health care. Do we have the materials and resources to acquire and maintain human health?

The United Nations’ drafted 17 sustainable goals (deadline is 2030) and they focused on ending poverty, hunger, and  discrimination against women. It also listed equitable and quality education; ensuring healthy lives through prevention; affordable energy; and sustained economic growth (The Guardian, 2015). These goals would take trillions of dollars. Let me state this more clearly, ending poverty would approximately take 66 billion dollars a year; and sustaining infrastructure (e.g., water, agriculture, power, and transport) would be 17 trillion annually (The Guardian, 2015). The World Health Organization drafted a Health Impact Assessment to determine which health indicators can indicate if we are advancing sustainable development (WHO, 2015). For instance, if we can prevent pollution then pulmonary and cardiovascular diseases may decrease (WHO, 2015).

Sustainability and Death with Dignity

Since Death with Dignity does not exist in the State of Arizona it makes it difficult to have dialogue about sustainability. Looking at states like Oregon, Washington, and Vermont it is important to mimic what they have done to legalize and maintain death with dignity. As time moves on, so does healthcare. It will be imperative the laws reflect these changes. For instance, there may be a day where the definition of physician-assisted death may include nurse practitioners. To date, only physicians can write a lethal prescription (Death with Dignity National Center, 2015).

As stated in previous weeks, I believe sustainability of the Death with Dignity movement hinges upon continued education of the American people, especially in states where this end-of-life option does note exist. Also, bills modeled after the Oregon Death with Dignity Act will help those drafting the bill utilize correct verbiage; and  (most importantly) Oregon has years of data to prove its safely enforced (Death with Dignity National Center, 2015).


Final Thoughts…on Sustainability

While researching this topic, I found the very essence of true sustainability. This story is truly for our green readers. It appears the funeral business has been causing havoc on our Mother Earth. Here are some alarming facts about the funeral business and waste:

  1. Approximately 30 million board feet of chemically-treated hardwood; 827,000 gallons of embalming fluid; and tons (in the thousands) of concrete, steel, copper and bronze are used yearly.
  2. Embalming fluid, containing formaldehyde, has been found in groundwater; and is carcinogenic.
  3. The wood used for some caskets, mahogany, that is endangered.
  4. Cremations cause approximately 600 pounds of mercury (i.e., fillings from teeth) to be released into the atmosphere. There have been legislative attempts for filters with cremations.
  5. A 10-acre cemetery has enough wood to build 40 houses (Death with Dignity National Center, 2015).

The Green Burial Council is a non-profit organization dedicated to environmentally sustainable death care (Death with Dignity National Center, 2015). It starts with choosing a designated conservation burial ground that is owned by a non-profit. There will be no vases or plastic flowers at burial sites, but only indigenous plants and flowers; and 5% of burial costs go towards an endowment to invest back into the land (Death with Dignity National Center, 2015).

This was the first time I heard of a green burial. Just a thought for those literally worried about sustainability (even in death).


Death with Dignity National Center (2015). Dying to give back to the Earth. Retrieved from

Death with Dignity National Center (2015). Death with dignity around the U.S. Retrieved from

The Guardian (2015) Sustainable Goals:All you need to know. Retrieved from

United States Environmental Protection Agency (2015). What is sustainability. Retrieved from

World Health Organization (2015). Health indicators for sustainable goals. Retrieved from

Week Twelve 4/5/15 to 4/11/15: Health Care Financing


Health Care Financing

This week we will talk money and healthcare. The main concern regarding health care is what will something cost. Projections by the Congressional Budget Office (CBP) estimate that the total spending on healthcare will double by the year 2035; and will consume more than 30% of the gross domestic product (GDP) (Longest, 2012).

Medicare and Medicaid remain the biggest of the fiscal challenges for the United States (U.S.) (Longest, 2012). As stated in a previous posts, the Affordable Care Act (ACA) has created the Innovation Center (a segment of Medicare & Medicaid Services) in order to test new health care payment and service delivery models to improve quality of care; and decrease healthcare expenditures for Medicare & Medicaid beneficiaries (U.S. Department of Health & Human Services, n.d.). Currently, the Innovation Center is evaluating 18 major payment and service delivery models. Some of those models are as follows:

  • Partnership for Patients: Aims for 40% reductions in hospital acquired conditions; and a 20% reduction in readmissions.
  • Strong Start for Mothers and Newborns: Reduce risk of complications and long term healthcare problems for expectant mothers and newborns (U.S. Department of Health & Human Services, n.d.).

Financing and Death with Dignity

Death with Dignity participants will never receive federal monies to pay for lethal prescriptions. In Oregon, the Death With Dignity Act does not specify who pays for the services; and payment is determined upon individual insurers. Insurance companies cannot view lethal prescriptions as a suicidal act during the decision phase of payment (Oregon Public Health Division). If Medicaid is the insurer, only state funds can be utilized (Oregon Public Health Division, 2014).

Financing and End-of-Life

A saving grace for people seeking some form of comfort care at end-of-life is that Medicare Part A does pay for hospice services. The requirement for hospice services include:

  • Two physicians (e.g., following and a hospice physician) confirming a terminal diagnosis (6 months or less)
  • Agreement to accept comfort vs. aggressive treatments
  • Patient (or MPOA) signature providing consent to hospice services

It must be stated that the ACA is now allowing that patients under 21 years of age can seek curative (aggressive) treatments while in a hospice program without the worry of being discharged or paying out-of-pocket for hospice services (, n.d.).

Final thoughts on Healthcare and Financing

According to the World Health Organization the goal is for universal health coverage to ensure that all people of the world have the health services they need without suffering financial hardship (WHO, 2015). Some staggering statistics provided by WHO:

  • One billion people cannot receive needed health services
  • 150 million people suffer financial catastrophe upon receiving health services
  • 100 million people are pushed below poverty line upon receiving health services (WHO, 2015).

Please watch this eye-opening video about financing health care. What are your opinions about health care and financing?



Centers for Medicare & Medicaid Services (n.d.). About the CMS innovation center. Retrieved from

Longest, B. B. (2010). Health policymaking in the United States (5th ed.). Chicago, IL: Health Administration Press. (n.d.). Hospice benefits. Retrieved from

Oregon Public Health Division (2014). FAQs about Death with Dignity Act. Retrieved from

United States Department of Health and Human Services (n.d.). HHS FY2015 budget in brief. Retrieved from

World Health Organization (2011, July 6). WHO: Financing health care. Retrieved from

World Health Organization (2015). Universal health coverage. Retrieved from

Week Eleven 3/29 to 4/4: Characteristics of Innovators and Change Agents in the Healthcare Sector


Innovators and Change Agents

This week we will talk about those who innovate and change. When I hear the words innovator and change agents, I immediately think of people who think outside the box to make necessary changes. They are the producers of the world; and they have the uncanny ability to lead and inspire others. They are true visionaries. Obvious people (to me) who come to mind are Steve Jobs, Bill Gates, Florence Nightingale, George Washington, and Barack Obama.

Innovators in the Healthcare Sector

Innovators in the healthcare sector have a hard job of leading those to accept new ideas. When it comes to health, many people don’t like change. Speaking of change, the person who chanted that word in the year 2008 was Barack Obama. He is a perfect example of an innovator in the healthcare sector. Although the Affordable Care Act (2010) has its fair share of opposition, it was President Obama’s primary platform; and he campaigned heavily for the bill to pass. His vision was for every American to have affordable, quality healthcare.

An interesting addition of the ACA was the creation of the Innovation Center (section 3021), which is a component of the Centers for Medicare & Medicaid Services. It was formed by Congress to perform the following :

  • Evaluating new payment and service delivery models
  • Evaluating and advancing best practices
  • Engaging stakeholders to participate in developing new models for testing (Centers for Medicare & Medicaid Services (CMS), n.d.)

This agency was created to assist in developing and evaluating methods to provide high quality, lost cost care for medicare beneficiaries. It would be interesting to see a productivity report since its inception. I did find a new ACA initiative (2-12-2015) for better oncology care that was developed from feedback from the oncology community, patient advocates, and the private sector (CMS, n.d.).

linda lopez

Change Agents and Death with Dignity

In the state of AZ, former Representative (and former State Senator) Linda Lopez introduced the Aid in Dying bill multiple times. Lopez was a supporter of the bill due to her own father dying an uncomfortable death (Fifth Freedom Foundation, 2003). Although the bills never passed, it shows the tenacity Ms. Lopez had; and her passion about supporting a cause she believed in (from her own personal experience). Regardless of your party beliefs, It is refreshing to observe a politician who rallies behind a cause (and not for political gains).


Final Thoughts…Innovate and Lead

I invite you to listen to the following TED talk by Simon Sinek. It may inspire you to be a change agent. What is your Why?



Centers for Medicare & Medicaid Services (n.d.). About the CMS innovation center. Retrieved from

Centers for Medicare & Medicaid Services (n.d.). New Affordable Care Act Initiative to encourage better oncology care. Retrieved from

Fifth Freedom Foundation (2003). Newsletter. Retrieved from

Simon Sinek (2009, September). How great leaders inspire action. Retrieved from

Week Ten 3/22/15 to 3/28/15: Change Theory


Kurt Lewin and the Change Theory

Kurt Lewin  immigrated from Germany to the United States in the 1930s; and dedicated his entire career on the study of human behavior. He was deemed by his peers as the founder of social psychology (The Atlantic, 2015). During World War II there was a meat shortage; and the government needed help. Their goal was to change the eating habits of stateside Americans in consuming (the plentiful) organ meats instead of the popular (familiar) cuts of meat that were in shortage. This was a difficult task since the majority of Americans considered organ meats as taboo and a marker of poor social status (The Atlantic, 2015).

The way Lewin (and his partner in the experiment, Margaret Mead) approached this task was to understand the reason why people avoided organ meat; and the answer they came up with was unfamiliarity (The Atlantic, 2015). Meaning, if people are unfamiliar with what organ meats are then why would they consume it? The first step in familiarizing the public was in titling organ meat as “variety meat” and deeming one “patriotic” for eating variety meat. Also, print campaigns, community group cooking lessons and cook books (to teach how to prepare variety meats) were heavily marketed by the government to propagate the variety meat message (The Atlantic, 2015). Did the variety meat experiment work? Well, it did last throughout the war; and helped the meat shortage efforts, so it those terms it was successful.

This type of work led Lewin to creating his Change Theory (1947) that was a three-step model in organizational change:

  1. Unfreezing Stage: Those in a group need to unfreeze or let go of old ways (or prior thinking) in order to accept the new change.
  2. Change Stage: This stage is the actual change in the groups thoughts or behaviors; and the movement into the intended change.
  3. Refreeze Stage: This is the final stage which is cementing the change as now permanent (Burns, 2004).

change theory

How Does the Change Theory Apply to Death with Dignity?

This post began with a meat shortage story; and now I am asking you to apply this to the Death with Dignity law. Seems odd, but the point of the meat story was to highlight the importance of understanding your audience before broaching the word change. For most people, change does not come easily; and it can be a slow process. For instance, Death with Dignity was passed in Oregon in 1997. Here we are, almost two decades later, still trying to convince people that Death with Dignity is a good idea.

In Arizona, the Change Theory would definitely need to take hold in the state government. This will take an aggressive legislator to campaign for the bill; and to convince the majority of voters that mentally competent, terminally-ill patients have the right to choose how they want to die.


How can one person start change? In past posts, I have mentioned a grassroots movement starting through organizations like the Death with Dignity National Center. These dedicated volunteers have been campaigning and educating people across the country on what Death with Dignity means; and how others can be involved. This movement has been effective and there are many states that have drafted bills that mimic the Death with Dignity law in Oregon (e.g., New York) (Death with Dignity National Center, 2015).

Like I stated with the meat story, it is a good thing to familiarize and educate people about your mission; and hopefully change will come.


Burnes, B. (2004). Kurt Lewin and the planned approach to change: A re-appraisal. Journal of Management Studies, 41(6), 977-1002.

Death with Dignity National Center (2015). Death with dignity around the U.S. Retrieved from

The Atlantic (2015). The World War II campaign to bring organ meats to the dinner table. Retrieved from

Week Nine 3/15/15 – 3/21/15 Policy Governing Access to Data and Privacy Protection in an Electronic Age


HIPAA and Privacy Protection

Privacy protection in the healthcare world revolves around the acronym HIPAA. It is a term you hear often from patients to providers, but what exactly does HIPAA entail? To start, HIPAA stands for the Health Insurance Portability and Accountability Act (1996). Below is a quick summary of some key points:

  • Protection of healthcare coverage in terms of job termination, divorce, separation, etc; and coverage regarding preexisting conditions.
  • Privacy and rights protection through the creation of Protected Health Information (PHI).
  • PHI must be observed by health care providers (e.g., physicians, pharmacists, nursing homes, clinics, etc), health plans (e.g., insurance companies, Medicare, HMOs, etc) and a health care clearinghouse.
  • National provider identifiers (NPIs) for individuals instead of social security numbers to ensure privacy and protection.
  • Patient access to medical records and the identification of those who can access the records; and the capability of making changes to medical records (U.S. Department of Health and Human Services, n.d.).

The one disclaimer about HIPAA: It is observed by those covered entities who conduct healthcare transactions electronically (Centers for Medicare & Medicaid Services, n.d.).

Privacy and preserving a patient’s rights are imperative in the today’s healthcare world. With the advancement of technology, patients are worried about who has access to their information.  Where the federal government ends with HIPAA and privacy laws, state laws are in place to take over. For instance, if state laws are more stringent in areas of privacy they will take precedence over HIPAA. Congress has mentioned a preemption of state privacy laws with a single federal health privacy standard, but a majority of politicians do not want to be associated with taking away citizens’ privacy rights (Pritts, 2007).


Privacy Protection and Death with Dignity

We all value our health; and most importantly we value keeping our information private. Most people do not want their medical history, lifestyle choices, lab results, prescriptions, procedures, etc., made public. This rings true for a terminal diagnosis. For instance, Steve Jobs, the genius behind Apple, kept his pancreatic cancer diagnosis a secret for some months. The media assumed it was because the diagnosis would have hurt Apple stock prices (CNET, 2015). Some terminal disease processes, like cancer, can bring a stigma that a person is weak; and those diagnosed are given a death sentence by public opinion. As a hospice nurse, I cared for patients who placed shame upon themselves for “giving up” for choosing comfort care in lieu of aggressive treatments. Regardless if a person chooses aggressive treatments, hospice, or death with dignity, the decision should be a private matter between the affected person and their loved ones.

Other Thoughts…About Rights…and Privacy

In the United States (U.S.) there is ongoing dialogue about respecting one’s rights. This week the focus was on the right to privacy in an electronic age. Supporters of Death with Dignity would say that people of the U.S. are being stripped of their human rights. Also, those participating in Death with Dignity are being condemned by opponents in a public forum. If one if choosing to end their life with dignity, shouldn’t we all respect their decision and privacy in this matter? I guess this is the ongoing debate (not only with healthcare rights) but also reproductive rights, gay rights, etc. The debate goes on!


Centers for Medicare & Medicaid Services (n.d.). HIPAA: General information. Retrieved from

CNET (2015). Jobs his cancer diagnosis for nine months. Retrieved from

Pritts, J. L. (2007). Federal efforts to impose uniformity on state health information and privacy laws. Health Law & Policy, 2007, 20-23.

United States Department Health & Human Services (n.d.). Understanding health information privacy. Retrieved from

Week Eight 3/4/15 – 3/11/15 Private Sector Innovation and Policy Advancement

private sector

Public Sector regarding Policy Advancement

Welcome back to the dignity discussion. In Week Six we talked about the public sector influences on policymaking. This week, let’s talk about the public sector.

We established that the public sector constitutes governmental federal, state, local, county, and city agencies that perform public services and establish laws for the greater good of its citizens. What about the private sector? Since the public sector is government run than the private sector is categorized as businesses, organizations, or agencies that are not government controlled. The private sector can also be divided into for profit (e.g., monetary goals) and not-for-profit categories (e.g., has a greater mission other than monetary).

Longest (2012) describes the influence of interest groups on the policymaking process hinges on the amount of resources they have at their disposal. In Week Two, former Maryland State Representative, Sam Arora, confirmed this by stating the following:

  • Policymakers are not always “politicians”; and the majority of bills are drafted by lobbyist groups (although he didn’t operate that way).
  • The biggest challenge of policymaking was time, staffing, and resources (he only had a budget of $39,000).

Other factors that can influence policymaking is the size of group’s membership and the prestige of the group (Longest, 2012; Ornstein and Elder, 1978).

Private Sector and Death With Dignity

In Arizona, the aid in dying bill had been repeatedly denied. When speaking with Mr. Arora, I inquired if this bill still has a chance to pass. Mr. Arora did say a good bill always has a chance to pass, especially when there are lobbyists or interest groups are supporting the bill.

Today, legislators wanting to pass the aid in dying bill in their states are looking to organizations like Death With Dignity and Compassion & Choices to help with education and legislation.

Here are a couple of articles about legislators who have reached out to these organizations to elicit public support; and help draft bills.

In the below article, Compassion & Choices is organizing rallies in California to support an aid in dying bill (Santa Barbara Independent, 2014).

In this article, the lawfirm Debevoise & Plimpton LLP and advocates with the groups Disability Rights Legal Center and End of Life Choices New York (EOLCNY) filed a lawsuit in the New York Supreme Court to allow doctors to prescribe lethal prescriptions (Newsweek, 2015).

compassion and choices

Final Thoughts

These examples show how the private sector could influence policymaking for the aid in dying  movement. I invite those who support the movement to visit the Death With Dignity ( and Compassion & Choices  ( websites to learn more about the organizations; and to investigate how to bring the movement to Arizona.


Longest, B. B. (2010). Health policymaking in the United States (5th ed.). Chicago, IL: Health Administration Press.

Newsweek (2015). New lawsuit could make N.Y. 6th state where doctors can ‘aid in dying.’ Retrieved from

Ornstein, N.J., & Elder, S. (1978). Interest groups, lobbying, and policymaking. Washington, DC: Congressional Quarterly.

Santa Barbara Independent (2014). Dying with dignity in Santa Barbara. Retrieved from