Health AGEnda

Making Hard Decisions Easier

Posted in category End of Life Care

28 comments

Shortly after I was diagnosed with inflammatory breast cancer a scan showed a hot spot on my lower spine.  Was it the spread of cancer?  My oncologist scheduled a bone biopsy at my hospital, Maimonides Medical Center, in order for us to find out.

A few days before the procedure, I went in for preadmissions testing.  As part of my formal intake, in addition to collecting my insurance information and poking and prodding me a few times, the nurse asked me if I would like to fill out an advance directive. This was not because she was a miraculous oracle who knew the outcome of my biopsy, which would leave me with a Stage IV  diagnosis. No, her question was merely standard procedure.  I said yes, and shortly, a specially trained social worker arrived to walk me through the process.

The author and her mother, June 2011

A cheerful young woman reminiscent of a camp counselor sat down next to me with papers neatly attached to her clipboard.  The first step, she explained, is appointing a health care proxy, someone you trust to make health decisions for you should you become incapacitated.  Being a nurse, I knew this, but it was comforting having someone there with me while I filled out the form. I chose my mother.  Since my diagnosis, she and I had had numerous conversations about what I wanted should my disease progress and take away my quality of life. I trusted that she would respect my wishes, even if that meant making painful decisions as my disease progresses.

There is another form of advance directive that I haven’t completed yet—but will—with the assistance of that same social worker.  It is nationally known as the POLST or Physician Orders for Life Sustaining Treatment.  Developed in Oregon and disseminated by the California Healthcare Foundation, POLST turns the treatment wishes of seriously ill individuals into physician-signed medical orders that the health care team must follow.

At the moment, I feel fine. I would want to be resuscitated, intubated, hydrated, and whatever else was necessary to get me back on my feet. Once the cancer begins to seriously compromise my health, however, I will fill out the POLST with instructions to limit my treatment to comfort care only.

Talking about our wishes when we are dying is hard.  It’s hard for patients, families, and health care professionals.  I look at the POLST form as a way of lightening the load on my family and on my health care team by informing them in advance of my treatment choices.  It also offers the added bonus of ensuring that the treatment I get is the treatment I want, not what others think I want.

Even though filling out the POLST is reserved for those at the end of life, I believe everyone should know what is in it. It makes a great starting point for discussions with the friend or family member you intend to appoint as your health care proxy—which everyone, even the young and healthy, should do.

After discussing the POLST form with me, my mom said that she never knew you are allowed to refuse antibiotic treatment for pneumonia and other infections at end of life. While I am not suggesting that everyone would choose this, I would prefer to limit prolonged suffering.  My mom would as well.

Once I filled out my health care proxy form, the social worker advised me that it would stay on file at the hospital and with my oncologist. She recommended that I give copies to my mother, my primary care physician, and anyone else or any other institution involved in my care.  (And as a reminder, Mom, I keep a copy in my top dresser drawer.)

The social worker left me feeling empowered and positive.  Later that week when I found that cancer had in fact spread to my spine, I was comforted to know that the care I will receive will be the care I choose.  In my remaining lifetime I would like to see more hospitals, oncology centers, and nursing homes adopting Maimonides’ wonderfully integrated approach to advance directives. They didn’t wait until I had the terminal diagnosis or was hooked up to machines in intensive care, when health care decision-making is fraught with stress and fear, to ask. Instead, they made it part of their routine and trained a staff member to work with patients and explain the issues.

Why can’t this practice be more widespread? Why can’t all other patients in my position and all older adults have access to this vital yet simple service? Why do policymakers advocate for patient-centered care while letting “death panel” nonsense stifle the conversations that would help patients make informed treatment decisions?  The expense is minimal—some forms and one terrific social worker—but the peace of mind it affords patients is priceless.

Fourth in a series. See also:

 

28 thoughts on “Making Hard Decisions Easier

  1. I agree this is something that should be included in all hospitals. It should even be included for all patients. While you had the chance to make a decision during a time in your life that could lead to death, many people are severely injured or harmed without notice.

    Anyone should be able to sign a similar form to remove (1) the burden on their families and (2) the legal hassle of a living will. Family members are put in an impossible situation where they must figure out what the patient ‘would have wanted’ like you write.

    Forms like these can lead to empowering people to make better health decisions and hopefully lead easier lives because they got to make all of the difficult decisions.

  2. Thank you Amy for this wonderful discussion. Maimonides Medical Center seems to have a wonderful patient-centered approach. It seems that too often the form is just handed out to the patient with little discussion or assistance.

    It seems many health professionals are reluctant to bring up the topic of advance directives out of fear that it will be upsetting to their patients. Your story is a powerful reminder that when done in a sensitive manner, it can actually be reassuring and empowering by giving a patient control over their health care and showing them that their values are respected.

  3. Amy, thank you for putting this better than I’ve ever read. Please accept my apology if my question is too personal: to what extent have you (or should you) discuss your preferences/choices with your children who I believe are not youngsters? How does a parent judge/decide, in your opinion, how to approach the issue with their children? I value your insight and appreciate your response.
    Love,
    Ethel

  4. Ethel, you ask the very best questions. And your admiring fans (like me) love you for it. When I was first diagnosed with cancer we did not know if it had spread. At that earliest point I began to have conversations with my two young adult children, Stephanie and Michael. Everything was so raw for them. They were not able to really take it all in. Over time I have shared very detailed information with them. They have read all the blog posts. And they know that I prefer to focus on quality given that aggressive treatment will not cure this advanced, rare and deadly form. My children have openly shared that they would not want to be in the position of making the hard decisions even though they support the approach that my oncologist and I are taking. As their mom, I understand and will honor their wishes. My sister, Sue, is also very well informed of my choices and would make the decisions if my mom is unable to. How do you judge if someone is able to serve as your proxy? I think the POLST form offers questions that serve as a great guide for discussion. You should know that our family has discussed end-of-life decisions since long before my illness. I entered the field of geriatrics in part because of my grandmother, Shirley Dinnerstein. You will find her in the ethics textbooks as the case that paved the way for families to make decisions when their loved one is incapacitated. As a young child I remember running to open her hope chest to see what present was waiting for me. As an older child she would sit with me and have long discussions about life and her friends. Later, when she developed Alzheimers Disease, she lived with us until she needed care that in those days could not be provided in the home. My mother and I have always talked about her wishes. Yes, I am her healthcare proxy and have been for years. Now, sadly, it’s her turn. And she knows my wishes since long before the diagnosis. I hope that those reading this will consider carefully who will serve as your proxy and inform them fully of your wishes as your health changes.
    Much love to you, Ethel

  5. Amy, thank you for sharing your story with the goal of helping others know about the POLST Program. POLST is not for everyone many people are too health and should have an advanced directive as you do but will wait to complete a POLST form until their illness becomes more advanced. Advance directives allow you to appoint someone if you can not speak for yourself and to share your values about things that might happen in the future. A POLST from turns those wishes into action when you illness may have progressed and you are no longer talking about the future but today and the here and now. POLST provides medical orders to assure that you receive the treatments you want and avoid those you do not want. The POLST Program is completely voluntary. No one has to have a POLST form. It is important to remember that you can always change your mind and have a new POLST form written. Thank you for your courage in sharing your story as it is likely that others and their family members will suffer less because you were willing to share your wisdom and experience and help others know and when completing a POLST form may be helpful
    With all best wishes to you and your family.
    Susan Tolle MD

  6. Susan, thank you for your generous comments. [Note to our readers: Susan Tolle developed the POLST form and leads the national dissemination efforts.] As you added, Susan, POLST is most appropriate for seriously ill persons with life-limiting or terminal illnesses. But anyone can fill out a healthcare proxy and designate someone to make decisions if they are not able to do so. And discussing the questions on the POLST form were extremely helpful. It can help you and your proxy become aligned about decisions you would make and under what circumstances. Thank you to Susan, your team, and the California Health Care Foundation (cheers for Kate O’Malley). Warmly, Amy

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  8. Dear Amy,
    Thanks for sharing your observations, feelings and good, sound advice. On April 4, 2010 our 47 year old son Jeffrey was suddenly admitted to the hospital with symptoms of a stroke; on April 7th just prior to surgery for transplantion of lifesaving organs for others, he peacefully stopped breathing. For all of his family with him in the operating room, peace came from knowing that his last spoken words to us, witnessed by the nursing staff, made clear his wishes. From this experience, our family learned that advance directives on end of life issues must be considered and expressed long before the expected need…since one can’t always anticipate when exactly these documents will be needed.
    With warmest regards,
    Sandra Gold

  9. Dear Amy — thank you for showing the way by describing your experience with advance directives, your ideas about POLST and how you are keeping all lines of communication open with your family. I especially appreciate the role of the social worker in a busy medical center who was able to normalize the process of completing an advance directive so you felt empowered and prepared. As always, I so appreciate your candor and approach to serious issues — head on and head up. Thank you.

  10. Nursing in nursing homes shows me the difficulties of end of life care decisions.  A 95 year old resident who loved me was moved to my hall after her recent hospitalization for a broken hip.  She was in great pain as she was moved.  Now she had pneumonia.  The nurse practitioner doubled her antibiotics.  I returned the next day to see that Hospice had discontinued all her meds except morphine and atropine.  When the family asked me to give her morphine and atropine I balked.  Her respirations were below 12 per minute.  I called the hospice nurse to see if she would administer the meds.  In most nursing homes hospice nurses would come to the home.  But this hospice, which was a sister company to the home, said that the floor nurse had to give the meds.  I said that I had doubts about hospice’s judgement, which they didn’t appreciate.  I finally called the doctor, and he had an assuring way about him.  I gave the meds.  As the resident’s pneumonia attacked her the next five days, I was more than eager to give the morphine to ease her out of this world.  Do you understand my concerns?  The floor nurse may be emotionally closer to the patient/resident, and the floor nurse may have no training or guidance from the hospice side.  A floor nurse who does critical thinking is going to ask questions, regardless of what family, hospice or physicians order.  Each of us must live with his conscience.  Since I thought that the antibiotics would successfully treat the resident’s pneumonia, I thought that the decision to discontinue her antibiotics was premature.  Yes, I knew that the resident’s days would be filled with pain on account of her broken hip.  But I am uncomfortable with these big decisions we make that hasten the resident’s death to avoid the resident’s pain.  

  11. Sandra, thank you for sharing your perspective on the importance of advance directives. You have my deepest sympathy on the premature loss of your son at 47 years of age. You and the Gold Foundation have had an extraordinary impact by encouraging and showcasing humanism in physicians. Diane Meier, a leader in the field of palliative care, is but one example of the people and care you support. We at the Hartford Foundation appreciate your interest in ensuring that all physicians are prepared to support advance directives and end of life discussions. Personally and professionally I thank you. Warmly, Amy

  12. Amy:
    I am so glad to hear that POLST is touching you in New York.  As you may already know, The Retirement Research Foundation just funded a special initiative designed to help spread the availability of POLST nationally.  The National POLST Task Force, an all volunteer force for quality of life at life’s end, has been working hard on this for nearly two decades.  The RRF grant is designed to give them the resources to intensify their efforts.  It will provide funding to five states that show strong potential for wide POLST adoption, and it will support innovative projects that can help spread the word about POLST in states where it is not yet approved by policy makers.  It will also enable POLST experts to serve as mentors to POLST coalitions in other states so that they can avoid the pitfalls others have experienced and take advantage of the insights others have learned about how to make progress happen.  Most importantly, we are hopeful that the effort will enable tens of thousands of persons like you, with life-limiting illness, have the peace of mind of knowing that they will receive all the care they want, and no more, when the end of life draws near.  For most folks, like you, Amy, the choice will be to receive comfort care only.  But even those who would want all possible intervention, POLST will enable hospitals, nursing homes, emergency medical personnel, physicians and nurses know what they would want.

    I will be hoping that it is a long time before you need to write any ‘comfort care only’ guidance for your health care providers.  Your leadership in sharing your experience and educating readers of the Hartford Blog about issues around death and dying, will leave a long legacy.

    You are loved.

  13. Nancy, Bravo to you and Retirement Research Foundation for your support of POLST and many other efforts that improve the health of our nation’s older adults. You are a wonderful friend, Nancy. Thank you for being ever supportive, a warm shoulder. And thank you on behalf of those at the end of life who need our support to make informed decisions. And to Steve, I understand the struggle of health care providers when caring for those at the end of life. As one of those folks, please know that patients need your support for their decisions. We all have a basic right to have pain well-managed. We have a right to choose comfort care versus aggressive treatment. And we can change our plan as often as we choose. You are doing what is right and good to care about those you serve. Please take a long view. It’s not about what can be done but what that person wants. Thank you, Stephen. I hope someone as caring as you is at my side when I need care. Warmly, Amy

  14. FIrst of all, my heart goes out to you, Ms. Berman. I read your article in today’s Wall Street Journal. Have you ever considered exploring the types of treatment that are available down in Mexico? My understanding is they are doing things that are not accessible in this country.  Just a thought. And  I wish you all the best.

  15. I read your letter to the editor in the WSJ today, and noticed that you did not append the title, M.D. after your name, but you did refer to yourself “As a clinician with expertise on geriatric issues.” A clinician is a practicing surgeon or physician. Is your field internal medicine, surgery, or oncology?

  16. Amy, as a 10-year IBC survivor, I was very saddened to learn of your diagnosis. (I just met you today through your letter to the editor in the WSJ.) It is always sad to hear of another IBC sister joining our ranks. I was diagnosed with what is now labeled Stage IIIc. After a significant amount of research, I elected to fight it and proceed with the most aggressive treatment available. Because of this, I chose to go to the institution in Houston where your second-opinion doctor was the head if the IBC Clinic previous to his moving to Philadelphia. He was not in Houston the time of my treatment, so I can’t speak of him personally. However, I was was very fortunate to have had all very compassionate and team-oriented doctors working with me at the time of my treatment in 2001. Yes, they were clearly focused on eradicating the disease, but so was I. I was also extremely fortunate to have had the treatment be successful, and since August 2001 have had no evidence of disease — the terminology used by the medical profession instead of “in remission” or “cured”.

    As a few others have mentioned in their comments, the survival statistics are getting better, even for Stage IV IBC. I will be honest and say that there were times during my treatment that it felt like the cure was worse than the disease, but even with some long-term side effects from the treatment, I am living an active life with what survivors call the “new normal”. Although as you know, Stage IV can not be cured, it can be managed for a significant amount of time, especially bone metastases.

    None of this is intended to question your decision. I just wanted to put out another possibility for those reading your blog. IBC — even at Stage IV — is not necessarily a “death sentence”. With all that my treatment entailed, looking back from the perspective of my 10-year milestone, I would definitely make the same choice.

    I am in awe of you and the work you do. You clearly have a wonderful support system of those who love and admire you. I join with those who wish you fulfillment and peace.

    Love and light,
    Sandy Savin

  17. Hello Amy,
    This morning I read your Letter to the Editor in the Wall Street Journal. I thought, this is the first Amy I know…. I want to let her know I support her in her decisions. I will keep her in my prayers I said to myself in bed this morning. Then I wanted to know what you want: do you welcome prayer as a support? Let me know.

    I have a co-worker who recently was diagnosed with advanced breast cancer. She is an athiest. When another co-worker said to her, I’m praying for her I looked at her face and thought that she may not want prayers from him. So I ask you, do you want prayer? And prayer to support what goals? I will think of you and hope for what you want. Take care, Cameron J-

  18. Per physician John Barchilon’s comment above that ” a clincian is a practicing surgeon or physician…” He wonders what Amy’s credentials are to refer to herself as having expertise on geriatric issues?
    Whoops? I am a licensed psychologist in California and I am a clinician. In my view, persons with training and experience — which Amy has — certainly can say that they have exprtise in geriatric issues. Titles such as M.D. and Ph.D. provide entry to a guild via licensure and are supposed to ensure that minimum standards are met for patient safety. From what I have read on her blog, Amy is a nurse with substantial experience in geriatrics. Please correct me is I am wrong.

  19. John, I am one of our nation’s 2.8 million nurses. My colleagues in the field of Geriatrics know well that I am a registered nurse. This is part of my professional biography on this website. And for those who follow regularly, my background was part of the introduction for a radio interview that was featured in the third blogpost of this series. Language is important and I do wish to be sensitive to your comment. I truly appreciate your sharing this perspective. It’s important to note that the use of “clinician” may vary. For example, Irene Higgins, a physician, recently wrote of the founder of my profession (in the Oxford Textbook of Palliative Medicine, 4th edition, 2011), “Florence Nightingale was one of the first clinicians to insist on measuring the outcome of care for her patients to evaluate treatment.” And nurses are honored as clinicians. The Visiting Nurse Association of America provides a Clinician of the Year Award which in 2011 went to a wonderful friend and former colleague in home health care, Elsie Soto, RN (Congratulations, Elsie! http://www.youtube.com/watch?v=KVyGcEtZawU). Given your comment, I will have to consider the best usuage of the term. But I would really value your thoughts, as a physician, on incorporating the patient’s goal into the treatment/care plan and avoiding one-size-fits-all healthcare. I opt for qulaity of life. What would you do at stage 4? Thank your for your comment, Amy

  20. I am very grateful for those of you who are not only sharing your thoughts but–very often–are sharing your own health battles. Sandy, congratulations on your ten year survival. Here’s to the next ten! According to the literature, roughly 8% of those with inflammatory breast cancer are outliers with a much longer than average survival. I hope to be a member of that club. Lynne, you are right that other countries offer a range of treatments. Of course it’s important to evaluate the level of evidence for any approach (given the tragedy of Steve McQueen years back). And Cameron, I deeply appreciate your prayers. My family appreciates your prayers. You warm my soul, Amy

  21. Dear Amy, I am writing about your letter to the editor that appeared in Thursday’s Wall Street Journal. What a wonderful letter! I hope people hear what you have to say and that they advocate for it. And if they see this comment, that they seek out your letter and read it for themselves. Because that letter is not posted here, I would like to take the liberty of repeating your concluding sentence: “It is incumbent on the FDA to approve medications that the evidence suggests will support the full range of patient goals.” Amy, I’m the author of Talking to Alzheimer’s and solidly in your corner on this.

  22. Thank you, Claudia. And for those that would like to read my letter to the Wall Street Journal you can go to: http://online.wsj.com/article/SB10001424052702304070104576399813992581324.html
    All best, Amy

  23. Thank you for sharing your story. We, at Kinergy Health find that there are many people who face similar situations and are happy to use our Navigators to help coordinate care and help with medical documents.

  24. Amy,
    I just read the article you wrote about your choice for pallative treatment. I wholeheartedly agree with your decision. I am a 12 year survivor of breast cancer who recently had a core biopsy and am being watched for further development. My brother died with cancer of the esophagus. It had spread to his liver before they knew what his problem was. He had two sessions of chemo with six months between. The second round was very very debilitating for him. While having the second round of treatments he starting having bone cancer show up in various bones in his body. I believe the chemo had so destroyed his immune system he had no way to fight back on his own, which allowed for a faster spread of the disease. I hope you continue with the treatments you are receiving and do extremely well. It was wonderful to read an article that was humane! So often the patient gets lost in the shuffle of “treatment options”. I too would refuse agressive treatment if given a “terminal” diagnosis. It is not quantity, but rather quality of life that is so important, particularly in the last few months of life. Best wishes Amy. You are in my prayers.

    • Wanda, congratulations on 12 good years! I wish you many, many more good years ahead. Thank you for sharing your brother’s experience and your wisdom. I completely agree with you that It is not quantity, but rather quality of life that is so important. Warmly, Amy

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