Decisions, Decisions (Part 1)

Barb Resnick HeadshotBarbara Resnick, PhD, CRNP
Professor
Sonya Ziporkin Gershowitz Chair in Gerontology
University of Maryland School of Nursing

A cancer diagnosis, particularly a second cancer diagnosis, is difficult at any age. Bordering on being a geriatric patient (in Maryland older adults are defined as those 55-years-old and older), I was diagnosed with my second cancer. The first one was 18 years ago when, at the age of 41, I learned I had breast cancer.

At that time, with teenage children and much of life (hopefully) ahead, the decision was not so much whether or not to go for treatment but rather what treatment to endure….the options for me being removal of all breast tissue (also known as a) mastectomy with the possibility for reconstructive surgery, as well as chemotherapy (the medical term used for treating cancer with special types of medications). The chemotherapy was actually based on clinical research into effective options for my type of cancer. A researcher at heart, I of course consented to that study—and 3 others!

Almost twenty years later I was faced with a new decision around a second cancer and whether or not to undergo a diagnostic workup, pursue treatment, or to crawl into bed and call Hospice (a type of supportive healthcare given to people with serious or terminal illnesses). I started developing difficulty swallowing, and after being diagnosed by multiple providers with a digestive disorder known as gastroesophageal disease, I finally was sent for an Esophagogastroduodenoscopy (EGD, or a procedure to diagnose and treat problems in your upper gastrointestinal tract).

I was told, quite bluntly, I had esophageal cancer. I was neither a smoker nor a drinker and had no risk factors short of a very strong familial history with both parents having multiple malignancies. Decisions needed to be made this time, as I was not particularly anxious to endure treatment and worried about what we see all too often in geriatrics: treatment just making things worse.

On the flip side, my quality of life was not particularly pleasant given that I couldn’t eat or engage in the social activities that go with eating (going to dinner meetings or lunches, going out socially, etc.). I had significant pain and gastroesophageal symptoms associated with the tumor and I feared what death would be like if I let nature take its course. I wrestled with that thought along with my age, almost 60, and the value of using health resources on me at this point in time.

I further wondered how I could progress toward the end-of-life (aside from starving to death), since I was otherwise healthy—a lifelong vegetarian, runner, far from even a moderate drinker, and a non-smoker. Weighing the pros and the cons, I did follow medical advice and the push of family, friends, and colleagues, and I connected with an oncology group that has expertise in esophageal cancer.

Additional decisions needed to be made as I went through a work up for metastatic disease (which refers to a cancer that has spread beyond the original tumor), as initial scans showed a spot on my liver. Pending the results of this additional testing, I would need to decide if I would pursue palliative treatment, or healthcare focused on helping me manage pain. For anyone who has gone through this period of limbo or has friends and relatives that have to endure it, you know what I know: it’s extremely difficult.

I knew (having been through chemotherapy before) that I was not going to consent to palliative treatment, so I made a decision, engaged my resources (I have a daughter who is a nurse!), and planned for a death with dignity. I might add I cleaned closets, organized who would teach my summer course, and took over several ongoing and some new research studies, as well. I decided, took charge, and planned in the event that the spot on the liver was confirmed as metastatic disease.

(Stay tuned for Part 2 next week.)

2016 Medicare Open Enrollment Is Underway – Don’t Miss Out!

Shah headshotKrupa Shah, MD, MPH
Assistant Professor
University of Rochester School of Medicine & Dentistry

Medicare open enrollment only comes once a year. It is important that you mark your calendar and consider enrolling or reviewing your plans, especially if your needs have changed. Are you fully satisfied with your current medical care? If not, this is the right time to consider your options. Choosing the right healthcare providers, hospitals, and other care settings can make all the difference in your health and satisfaction with life. You can’t stand still, though.

Who is eligible for Medicare?

  • You are eligible if you are:

1) a US citizen 65 years old or older, or

2) a permanent resident of the US for five continuous years and 65 years old or older.

  • Individuals younger than 65 years old can be eligible for Medicare under certain circumstances; the Medicare Eligibility Calculator can help determine if your situation qualifies you for Medicare.

Open enrollment for Medicare runs from October 15th to December 7th.

  • Your demand for health care is constantly changing. It is important for you to review your coverage and see if you need to make any changes to your coverage for the upcoming year.
  • If you are happy with your current coverage, there is no need to do anything.

Continue reading

Medicare Proposes Paying for Advance Care Planning

Have you ever wondered about all those codes you see on a bill or chart at your healthcare provider’s office?  If you’re covered by Medicare—the nation’s largest insurer dedicated exclusively to helping older people with their health expenses—chances are they’re part of a payment system known as the physician fee schedule.  Medicare pays eligible providers for their services based on the codes they use to bill for the patient visit.

Each year, experts from the Centers for Medicare & Medicaid Services (CMS) review, refine, and tweak the types of services included in the physician fee schedule to make it more responsive to patient needs and professional advice. The proposed schedule for 2016 was just released this week, and it’s got some important new updates that will benefit older Americans.  In particular, CMS is now proposing covering advance care planning (ACP), which would offer patients an important outlet for talking with healthcare providers about their long-term needs and expectations.  Many people have questions about what ACP is and how it works, and the infographic below from the American Geriatrics Society is a helpful guide to the basics when it comes to this important new service.

ACP Infographic_07 06 15

Interested in learning more or taking action?  Consider sharing this post or some of the ACP-related resources posted by the Health in Aging Foundation to Twitter (@HealthinAging) and Facebook (Facebook.com/HealthinAging).  You can also submit a comment of support to CMS to let them know you value ACP as part of your care.

Making Healthcare Decisions for Me, Part 2

Nancy Lundebjerg casualNancy E. Lundebjerg, MPA
Chief Executive Officer
American Geriatrics Society
Health in Aging Foundation

In my last post, I shared some personal reflections on the importance of completing an advance directive—what the process has taught me about my needs, my wishes, and the type of voice and control I want to have should I ever need someone else to make healthcare decisions on my behalf.

That last point is quite important, and—in honor of today being National Healthcare Decisions Day—I thought I’d walk through some of the questions and considerations that helped drive my own search for a healthcare proxy. These are built on discussions I’ve had with this person—one who knows me well—about the questions, answers, and decisions that are important to me. While these points reflect my own thoughts and perspective, maybe you can use them as a guide for considering what’s important to you—and how you’d want those points acted upon should someone else need to make important health decisions on your behalf.

 Who You Are, Mr./Ms. Healthcare Proxy?

  • You are my advocate and you are most definitely the person who has final say in decisions if I’m unable to make them for myself. Collaborative decision-making in tandem with my doctor is OK—but you know what I would want better than most.
  • You will not let anyone rush you through a conversation—you’ll make sure all your questions are answered.
  • You’ll make sure I’m getting the best care possible—you’ll know who my doctors are and where they trained.
  • You are someone I trust to do whatever needs to be done—and that includes letting me go gently if that is the right decision. And by “right”, I mean your right—others can advise you, but the decision is yours to make based on what we’ve talked about and what you know about my wishes, needs, and expectations.

What You Know about Me

  • You know that quality of life is more important to me than length of life.
  • You know that I, personally, don’t have religious or moral beliefs that are relevant to decisions about life-sustaining treatments. You should make those decisions based solely on my medical condition and my long-term prognosis (the likely course of the disease or condition).
  • You know how I feel about artificial nutrition and hydration. I personally think it’s an OK short-term solution if you are “waiting and seeing” if I’ll recover, but please don’t pursue it for me if I’m in a persistent vegetative state or if scans show no activity in a substantial portion of my brain.
  • You know that I would ask for prognosis, weigh all the facts, make a decision, and then stick to that decision.
  • You know that I firmly believe that there are no wrong decisions.
  • You know that I am not afraid of living with disability nor am I afraid of dying.

What You Understand About My Long-Term Prognosis

  • Get the facts and the prognosis from the doctor(s) overseeing my care.
  • Ask about how I will physically function. Ask if I’ll have trouble with my mental capabilities. If I will, ask what that means in terms of my ability to function.
  • Weigh those answers within the context of what you know about me and make your decisions accordingly.
  • Finally, be sure to make time for yourself—being my (or anyone’s) proxy is not an easy task. I know, I’ve been there and done that. Most of all, know that I am going to be A-OK with whatever decisions you make. I trust you—and that’s what this relationship is all about.