Health Advocacy Ethics – Conflict of Interest? Or Important Service?

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elderlywomanA recent conversation with a handful of knowledgeable people, people I respect a great deal, yielded two different outcomes – either a loud “yes, of course!!” or a loud “no, no way!” So I want to know what YOU think. As a prelude to the story – the question I will ask you at the end is:

Should Gwen become Mrs. Smith’s healthcare proxy? Can she ETHICALLY make that shift? (We are not asking a legal question here – only a question of ethics.)

Mrs. Smith is 90 years old and until recently was quite healthy.  She is alone; her husband died many years ago, and they never had any children. She has a few nieces and nephews, but hasn’t seen or heard from any of them in years.  She lives in the country and has no neighbors nearby.  Even her close friends from church have all passed away. Gwen has been Mrs. Smith’s health advocate for several years now, accompanying Mrs. Smith to doctor’s appointments, lab tests, and whatever was needed for her care. About three years ago, Mrs. Smith was hospitalized for a brief time;  Gwen sat by her bedside and was a liaison between the hospital staff and Gwen for the duration. Over these years they have become very close. Mrs. Smith trusts and values Gwen’s opinions more than anyone else on earth and thinks of her almost as the daughter she never had. Now Mrs. Smith has asked Gwen to help her make the healthcare decisions that she will designate in her advance directives.  Included is a request to Gwen to become her proxy – that is, the person who will, if Mrs. Smith becomes incapacitated, make any decisions that regard end-of-life care on Mrs. Smith’s behalf. (“Proxy” is one term used – others could be agent, representative or power of attorney.) Gwen, having been Mrs. Smith’s advocate for so long, knows Mrs. Smith and her end-of-life wishes better than anyone. But she must give thought to the ethical and legal considerations before she agrees.  And that’s where I am asking your opinion today. Remember the question:

Should Gwen become Mrs. Smith’s healthcare proxy? Can she ETHICALLY make that shift?

Background:

Patient advocates are hired to shepherd clients through their healthcare journey, from symptoms to diagnosis, through treatment, billing, claims, creation of advance directives and more. By contract or agreement, patient advocates do not and will not make decisions for their clients. Instead they help support their clients by finding the right resources to help in that decision-making. Further, this non-decision-making stance is identified in the existing codes of standards and ethics for private, professional health advocates. Legally:  For the sake of this argument, we’re going to assume that paperwork can be changed; that Mrs. Smith’s lawyer can draw up contracts that nullify the advocacy contract in favor of proxy contract. (BTW – I don’t know that to be true, and I am not a lawyer. But to ask the ethics question, we’ll assume it can be done.) We know that some states and provinces have licensing requirements for fiduciaries, guardians and conservators, and there are likely liability or E&O insurance questions, too – but we aren’t asking those questions today.

The Ethical Issue: There are at least two sides or arguments to this issue:

Side: Yes, Gwen can ethically choose to be Mrs. Smith’s proxy. Reasoning:

This should be Mrs. Smith’s choice. She has confidence, respect and love for Gwen. It will give Mrs. Smith an enormous amount of peace of mind which ethically is the right thing to do.

We can be reasonably sure Gwen can’t be both advocate AND proxy, but letting Mrs. Smith choose which role she prefers for Gwen puts her, as the patient, in the most important position (patient-centered, patient focused) and that is as it should be.

Side: No, Gwen cannot ethically agree to be Mrs. Smith’s proxy.* Reasoning:

Such a shift in relationship might create the appearance of a conflict of interest and is therefore unethical. Others may question the relationship between Gwen and Mrs. Smith as if Gwen has weaseled her way into Mrs. Smith’s good graces for Gwen’s own gain (for example, maybe Mrs. Smith’s will has been rewritten for Gwen’s benefit) or any other scenario where the relationship could be perceived as being for Gwen’s gain and not Mrs. Smith’s peace of mind.

This could result in a great deal of unpleasantness ranging from reports to Adult Protective Services (to determine whether financial or psychological abuse is occurring), to accusations by long-lost relatives. The resulting disruption and negativity to Mrs. Smith and to Gwen’s professional reputation are not worth the change. (Remember, please, that it doesn’t matter whether or not any of that conflict is true or real. It needs only be a perception on the part of someone who can make waves that the conflict exists.)

So once again, let me return to the question: Should Gwen become Mrs. Smith’s healthcare proxy? Can she ETHICALLY make that shift? Now it’s your turn to answer!

  • Please take this poll.
  • Weigh in with your comments, questions, opinions below.

…………………………………………………….

This poll was removed in February 2016 due to technical problems.
Here were the results before it was removed: 

• 409 total votes:
• 211 agreed that Gwen can ethically be Mrs. Smith’s healthcare proxy
• 198 say that no, she cannot ethically make that shift

…………………………………………………….

(*Many thanks to friend and colleague Ruth Linden for her explanation of the potential ethical conflict of interest.)

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Comments

  1. Stephanie Frederick  October 13, 2014

    Trisha, I assume that “until recently was quite healthy” refers to Mrs. Smith’s physical health. This question highlights the importance of completing end of life wishes while still of “sound mind”. I encourage clients and their families to start having the conversation at family gatherings with everyone over 18 yrs, and then document the wishes. (I particularly like Five Wishes, http://www.agingwithdignity.org). Mrs. Smith can choose anyone she wants as her health care agent. As a medical professional, there have been innumerable times that unnecessary grief and pain have been present at the end of life because these conversations didn’t happen..

    reply
    • Trisha Torrey  October 13, 2014

      Stephanie – while I agree that having the conversation is important, that is not the question at hand. If you could follow up with a comment that addresses the question after reading the post, I would appreciate it.

      If Gwen has been Mrs. Smith’s health advocate, is it ethical for her to change roles to that of a healthcare proxy?

      reply
  2. Terry Hale  October 13, 2014

    Mrs. Smith’s choice should be honored and she should determine the role she most wants Gwen to fulfill.

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  3. celtub  October 14, 2014

    I have two current clients, who I recently assisted with filling out Advanced Directives. They both asked if I would be their Healthcare Proxy. One client I’ve worked with for 3 years, the other less than one week. I told them both I wouldn’t feel comfortable doing this, precisely because of the issues mentioned above – I feel it is a conflict of interest. But I also told them I would continue to be their Healthcare Advocate to the end – by educating, counseling, and supporting their chosen Proxy, to ensure they make the right decisions for my client’s end of life wishes to be honored.
    Yes Trisha, as I just finished writing this, I can hear you gasp, “But who will pay you for this”? That didn’t occur to me at the time, and as I think of it now, I guess I was trusting that the Proxy would. (Clearly, this ethical plan needs work).

    reply
    • Trisha Torrey  October 14, 2014

      Celeste – great to have a real world example.

      No gasping here, because (more words that should ring in your ears!) – we always collect up front, right 🙂 ?

      reply
      • R. Ruth Linden, Ph.D.  October 16, 2014

        Celeste,

        A client of mine recently informed me that she has included text in her advance-care directive directing her POA for healthcare (her sister and her niece) to utilize me as a consultant in the event they need assistance in the form of my advocacy services in order to fulfill her end-of-life wishes. She allocated a specified and quite generous sum to be paid to me from her estate should her POAs retain me. None of this was done at my suggestion or even with my prior knowledge, BTW. Nonetheless, I think it is a creative and ethical way to manage the situation.

        Ruth Linden

        reply
  4. Sue Brodeur  October 18, 2014

    As a health care proxy with advance directives in place, you are ensuring the patients wishes are followed, not making decisions for them. I don’t see a conflict of interest.

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    • Charles B. Gurd, Attorney (and MPA)  October 30, 2014

      I agree with Sue if the wishes of the patient are well articulated and hopefully written down. As an attorney who has represented Social Security claimants and beneficiaries for more than 15 years, I have often been asked by them or their payees to become their health care proxy (Health Care Agent here in New Mexico). I have resisted this because usually I do not have a clear idea of what their wishes really are — many of my clients have neurological or psychiatric impairments. If, however, their wishes are well known and they are competent to make their own decisions and it is written down clearly that there could be a conflict of interest and they affirmatively state they want me to be their health care proxy then I think it is permissible to be their health care proxy. Charles B. Gurd, Attorney (and MPA)

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  5. R. Ruth Linden, Ph.D.  October 23, 2014

    Sue,

    I agree with you that, in theory, an agent for healthcare decision-making ensures that a person’s wishes are followed. But in reality, there is often a gap between a person’s wishes and the actions required to implement and/or interpret those wishes. Agents for healthcare decision-making must often make judgments based on incomplete information, unanticipated circumstances, and uncertainty. For these reasons, agents often find themselves in the position of making decisions.

    reply

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