African American Perspectives on Advance Care Planning

Advance Care Planning - An Overview

Sharon R. Latson
VITAS Healthcare Corporation

Gloria Ramsey, RN, JD
USC Center for Health Disparities

Advance care planning is generally used to refer to oral and written instructions about one’s future medical care in the event that one becomes unable to communicate these instructions. Advance care planning is a process involving oral conversations and written instructions that outline a person’s health care preference for the future, in the event that the patient becomes unable to make or communicate decisions for themselves.

Advance care planning is a process that involves the following steps:

  • Speaking with loved ones about preferences for end-of-life treatment
  • Getting information about the patient’s illness, reflecting upon the available choices about treatment and deciding what is most important
  • Deciding which person the patient would like to make health care decisions on their behalf in the event they are unable to make them for themselves; it is important that the patient talk to the chosen person to make sure that he or she agrees to do this and he or she knows the patient’s preferences

Advance care planning involves three basic elements. First, it is important for the patient to spend time thinking about their health care preferences and what they would want should they not be able to speak for themselves. The more time spent prioritizing their wishes, the easier time they’ll have communicating these wishes to their loved ones. Second, after receiving a commitment from a trusted friend or family member to act on their behalf in an emergency situation, the patient should talk to them in detail about their wishes. It is to not rush the conversation. The more detail covered, the clearer the patient’s wishes will be should an emergency occur. Finally, the patient must document and notarize their wishes and be sure to distribute copies to all parties involved.

The Advance Care Plan

The advance care plan is the outcome of the advance care planning process. Developing an advance care plan allows you to make a permanent record of the conversations you have had and to maintain a clear and up-to-date document about your preferences. The written portion of an advance care plan can take a number of forms. Some examples of the possibilities can include but are not limited to the following:

  • A letter to the person who will be responsible for this decision-making
  • An entry into the patients medical record
  • A formal, legal appointment of a medical guardian
  • An advanced care directive or any combination of these things

Recent advances in medical technology permit life to be sustained long after the human body has permanently lost its natural ability to perform basic tasks. Use of the advance directive allows patients the opportunity to provide statements, which may be periodically updated, documenting the type and extent of life-sustaining medical treatment they desire at the end of life.

Advance directives give patients a voice in decisions about their medical care in the event that they become unconscious or too ill to communicate these decisions. As long as patients are able to express their own decisions, the advance directive is not used, and medical treatment can be accepted or refused. If, however, the ability to participate in discussions about treatment is lost, the advance directive is used, if it has been duly executed. Because both federal and state laws govern the use of advance directives, statutory requirements regarding their use may vary from state to state. All 50 states and the District of Columbia have laws recognizing the use of advance directives.

There are two types of advance directives-the living will and the durable power of attorney for health care. The living will allows the patient to place their instructions for medical treatment in writing. The state law in which the living will is executed may define when the will goes into effect and may limit the treatments to which it applies. Typically, the living will contains the patient’s precise choices regarding treatment options, should they become unable to communicate these choices to their health care professionals.

The durable power of attorney for health care may also be called the medical power of attorney, health care proxy or appointment of health care agent. This document enables the patient to appoint someone to make decisions about their medical care if they are unable to make these decisions. In many states, the person appointed is authorized to speak for the individual at any time he or she is unable to make her own medical decisions, not only at the end of life.

Studies show that while African Americans support the concept of advance care planning, they are less likely to execute or use advance directives. Some believe that planning for death initiates the process of dying. "If I don’t acknowledge that I need a living will or durable power of attorney for health care, then I’m alright. If I do, then that means I need it."

The African American community is rich with - tradition and symbolism that is largely influenced by religious and spiritual beliefs and practices. A notion of "a beautiful home-going" or funeral is often viewed as an end-of-life celebration. However, the research continues to suggest that African Americans request aggressive medical treatment at the end of life even when it is unlikely that such treatment will improve outcomes. While a consistent rationale for this treatment option remains unclear, some have indicated that their requests are based primarily on mistrust and negative experiences with health care systems. A further explanation may be the patient’s mistaken belief that any option that fails to include aggressive treatment is a breach of the standard of care to which the patient feels legally entitled.

There are varying reasons as to why African Americans do not use advance care planning documents. Oftentimes the documents are comprised of confusing legal terminology and are difficult to understand, and in addition, many African American patients are unaware of the various treatment options at the end of life. In these instances, the health care providers’ attitudes toward advance care planning and how this information is communicated have contributed to the failure of African Americans to better utilize advance directives. Research suggests that while physicians recognize the importance of advance directives in directing treatment options, they express reluctance in initiating dialogues regarding these documents with their African Americans patients. In situations where these conversations have been initiated, physicians spoke for the majority of the time using vague terms that rarely explored the patients’ beliefs and values. More desirable outcomes occur when African American patients are provided opportunities to communicate their views regarding end-of-life options with physicians with whom they have established trusting relationships and who have demonstrated a cultural sensitivity to their beliefs and values.

Statistical research reveals that the perception of some African Americans is that if they had an advance directive, they might be cared for to a lesser degree by medical personnel and this conclusion seems to be consistent with elderly African American patients as well. In one study elderly African American patients were significantly more likely to request the use of life-sustaining medical interventions when compared to other groups examined, while white patients were significantly more likely to have completed advance directives. While the literature on the issue of racial differences and the use of advance directives is somewhat limited, it continues to present two very interesting conclusions: 1) African Americans complete advance directives less frequently than do whites, and 2) unlike whites, those African Americans and other people of color who have completed advance directives tend to indicate that they do want life-sustaining medical treatment administered and continued regardless of the state of their illness, and even when there is no medical hope of recovery.

Even in instances in which African Americans are medically declared to be in a persistent vegetative state, life-sustaining medical intervention continues to be the preferred option of care. Generally, people of color are less likely to complete advance directives and are more likely to request aggressive end-of-life care. Some emerging research tends to suggest that a dominant influence on African Americans in their decision-making in end-of-life care is their spiritual and/or religious convictions.

In addition to research on African American patient populations, some studies have examined differences of African American health care professionals regarding end-of-life treatment options. Of particular note is one study that concluded that while African American health care professionals have positive attitudes toward advance directives, they are less likely to have actually executed directives documenting their own preferences. Further research indicates that African American physicians choose aggressive medical interventions significantly more frequently than white physicians.

Ultimately, the research clearly indicates that end-of-life planning and treatment choices are directly related to race and culture. African Americans seem more likely to defer end-of-life treatment options to family members, believing that family will make the best decisions at the appropriate time. Some African Americans indicate that they did not consider completing advance directives because they believed that informal discussion and family communications were sufficient. They remain reluctant to sign advance care planning documents, fearful that they do not understand the documents and or the documents may somehow be used to prematurely limit treatment before all life-sustaining measures have been exhausted.

Moreover, their religious and spiritual convictions and general mistrust of health care systems are also relevant factors to be considered in their failure to execute end-of-life documents. Accordingly, it is crucial to understand the relationship between the values, beliefs and experiences of African Americans when examining their reluctance to use advance care planning documents. Many African Americans view advance care planning as "giving up hope." Physicians and other health care professionals who treat African Americans must convey to patients that their cultural and personal values will be respected when they are dying.

Statistics indicate that African Americans do not have access to good health care. Studies indicate that populations of color are predominantly served by physicians of color, including many foreign born medical professionals whose cultural experiences and training are vastly different from the patient base they serve. It is imperative that medical school programs work to increase the number of physicians and other health care programs across America must do likewise. Doing so will improve access by diverse communities to both health care in general and to physicians and others who are sensitive to attitudes of diverse populations toward end-of-life care in particular.

Poverty can play a large role in shaping African Americans’ attitudes toward end-of-life care. Some African Americans perceive that they would not have access to life-sustaining treatment because they could not afford it, or that the care would not be covered by their insurance.

A number of situations regarding end-of-life care often find their way into courtrooms. Advances in technology and medical treatment have heightened the expectations of patients and their families regarding expected outcomes. Some expectations, often unrealistic, have been promoted and fueled by mass media attention.

Why would these medical situations stimulate legal debates and discussions of multi-million-dollar lawsuits? Has the courtroom become the final arbiter for setting the standard of medical care, thus abrogating the traditional judgment and responsibility of the physician and other health care professionals?

Specifically in the area of end-of-life care, certain ethical and legal issues have become dominant. They include:

  • Competent/incompetent determinations
  • Validity of advance directives when challenged by family members
  • Physician-assisted suicide
  • Withholding and withdrawing of life support
  • Medical futility
  • Medical malpractice
  • Organ donation
  • Autopsy

While there is no indication that these issues impact African Americans more significantly than other groups, they remain constant challenges in discussions of end-of-life care for all people. It is important for health care professionals and policymakers to recognize that medical care, especially at the end of life, is not an exact science. Treatment options are not, and should not, be considered medical guarantees.

Advance Care Planning- A Family Caregivers Perspective

Camilla Hudson
Patient Advocate

Throughout my childhood and well into adulthood, my parents were the people I could always rely upon - for advice, for financial assistance, for support of any and every kind. So, as they aged and their health declined, it was a difficult transition for me to make as they were less able to function as my support network and I was confronted with the need to reverse roles and become their primary caregiver. At the age of 78, my mother was diagnosed with mild-stage Alzheimer’s disease and at that time, she was my father’s primary caregiver.

My father, then age 79, had a long history of heart disease, high blood pressure and major complications from diabetes including blindness and a below-knee amputation of his left leg.

I grew up on the south side of Chicago in a solid and stable, middle-class African American community. Our household consisted of my mom, my dad, my maternal grandmother, my younger sister and me. My father was originally from Clarksdale, Mississippi and had migrated north in the late 1930’s. After an entrepreneurial stint owning his own candy store, my father went to work for the Rock Island Railroad in the late 1950’s, where he eventually became their first African American mechanical foreman. My dad retired from the railroad in 1991 after more than 30 years of service. My mother, originally from Mobile, Alabama, also migrated to Chicago in the late 1930’s. Like many woman of her generation, she initially worked in a domestic capacity then later went to work for Montgomery Ward & Company as a billing clerk. My mother retired in 1982 after more than 35 years of service.

Growing up with my grandmother in the house taught me a lot of lessons that I did not necessarily understand as I was learning them. When I reached my teen years and my grandmother’s health began to fail, it was a given that my grandmother would remain at home with us. Over time, as my grandmother developed dementia, I watched my mother lovingly care for her mother even when there were times that it had to be exceptionally difficult for her. My mother never expressed a sense of burden or hardship and she never complained. In fact, she frequently commented that she was glad that she could care for her mother, that it was what she wanted to do.

In light of my mother’s Alzheimer’s diagnosis, I was faced with taking on the responsibility of my father’s care and experienced a steep learning curve with regard to what needed to be done to ensure my mother’s well being. As I moved into the role of primary caregiver, one of the first tasks was to determine my parent’s overall state of affairs. While I’d regularly assisted my mother with my father’s care, I had always held a supporting role. Now, assuming the lead meant having thorough knowledge of not only their medical diagnoses and plans for care, but also becoming thoroughly familiar with their financial situation and their daily care needs as well. While I’d always suspected that my parents had not taken the time to write and properly execute a will, I really had no detailed knowledge regarding what plans they might have put in place. Moreover, I had no solid idea of what types of plans or arrangements they might need and/or want to establish.

As I began the process of discovery and had initial conversations with each of my parents, I came to learn that while my parents had planned fairly well with regard to having sufficient income for their later years, which was apparently all that they had done to address their long term future needs. Not only did they not have a will, they also had no plans or directives in place for their long-term medical and health care needs. This was of especially great concern to me given my mother’s Alzheimer’s diagnosis. Generally speaking, all of their financial matters were set up making them one another’s primary beneficiary. Therefore, in the event of my father’s death, all financial and decision making responsibilities would automatically revert to my mother, who was far from being of sound mind. Were that to happen, it would be necessary to go to court, have my mother declared incompetent and then have a judge decide how my parents’ affairs should be managed and who should have the authority to make decisions on my mother’s behalf. Needless to say, this was a situation that was far from ideal!

The very idea of it all was somewhat overwhelming. My feeling was that something needed to be done to correct this situation and it needed to be done immediately. However, when I talked to my father and told him that it was imperative that he draft a will and make formal arrangements regarding both his own medical care as well as my mother’s, he simply didn’t want to hear it. While he didn’t dismiss me outright, he avoided giving direct answers to my questions and refused to have detailed discussions on these matters. When I attempted to push him further, he became angry and would tell me that he didn’t need me to tell him what he needed to do and that he was an adult and therefore quite capable of determining his own needs. Many times, our conversations ended in arguments, with both of us fuming. There were times when I just wanted to stop pushing him, even though I knew I was right about what needed to be done.

As my mother’s illness progressed, the more worried I became about my parents’ lack of planning. I made every adjustment I could on the financial matters, such as setting up direct debit from my parents’ checking account for utility bills and various other bills requiring monthly payments. It was necessary to hire someone to care for my parents during the daytime hours and I simply paid them from my own checking account and wrote myself a check from my parents’ account as reimbursement. While it could be argued that it would have been easier to manage these necessities had the proper planning been done, nonetheless all of their day-to-day needs were met and somehow or another, nothing fell through the cracks.

With regard to the medical aspect of things, we were not faring quite as well. First and foremost, I was not exactly certain what my parents did or did not want in terms of life saving measures. - i.e. did my dad want "heroic" action taken in the event that his heart stopped, just how far did he want them to go and, specifically, which procedures would he want or not want to have performed if he was in a coma or if he had brain damage. While my family had discussed these things vaguely over the years, we’d never had a discussion to address the specifics and emphatically determine what either of them might want or not want. For my mother, given the progression of her Alzheimer’s Disease, it eventually became an easy matter to say no to all of the above, simply because her mental status was deteriorating rapidly and it was obvious that her quality of life was already compromised beyond recovery. During the earlier stages of the disease, I would sometimes find my mother sitting on her bed or off in a corner crying quietly to herself. When I would ask her what was wrong, she would respond by saying that she didn’t understand why the Lord saw fit for her to live this way, or she would ask why the Lord didn’t just take her and deliver her from the pain of this awful disease.

My father was a different matter altogether. While my mother was physically well but experiencing a mental deterioration, my father was the exact opposite. He was quite clear and alert mentally but his physical well being was on a steady and constant decline. This left him very angry and very bitter. He’d worked hard over the course of his life and had been looking forward to enjoying his retirement. However, when he finally retired at the age of 72, he had been forced to retire as a result of his declining health. Therefore, instead of enjoying his retirement years, he’d spent them getting steadily sicker and sicker, and in the process, had lost the ability to do many of the things he loved and had planned to enjoy in retirement.

I slowly came to the realization that it was very possible that my parents were going to die without a will and/or any other legal documentation in place regarding their finances and their wishes for their medical care in the event that they were unable to make decisions for themselves. My mother’s Alzheimer’s disease had already progressed to the point that she was no longer considered competent and my father was therefore the designated decision maker given that they were married. I recognized that if my father were to die before my mother, I would certainly face whatever was required of me. Yet I remained committed to helping my father understand that he truly needed to "put his house in order," so to speak, and get all of his financial and medical affairs addressed in as timely a manner as possible.

Over the course of my mother’s illness, I learned a great deal about the legal aspects a family faces when a loved one is terminally ill. Learning and becoming fully familiar with the terminology was just the beginning - living will, durable health-care power of attorney, a

Do-Not-Resuscitate order (otherwise known as a DNR) and many others. Initially it was sometimes a little bit difficult to answer a medical provider’s questions fully and accurately because I just wasn’t certain as to what my father’s wishes were with regard to many of these matters. However, over time, I learned that while it wasn’t ideal, it was still acceptable to say that my father did not have a living will and I simply wasn’t certain as to whether or not he would want to be resuscitated.

As these incidences increased, it led to more discussion with my father as to making some decisions and putting some things formally into place with regard to his wishes for both himself and for my mother. Given that my mother had reached the more advanced stages of Alzheimer’s disease and her overall quality of life was significantly reduced, I eventually took it upon myself to tell medical professionals that she was to be designated as "DNR" or Do Not Resuscitate and no one ever questioned my authority to do so. While I felt completely right and within appropriate boundaries in making this decision, I still felt that it was my father’s responsibility, as her husband and as her direct next-of-kin, to put the right documents in order so that any and all questions on this matter were properly addressed. Despite this, my mother’s illness progressed and in the end, she passed without my father ever so much as verbalizing anything specific with regard to advance directives for either of them

While I will never really know, with certainty, what changed and what made the difference in my father’s attitude but after my mother’s death, my father seemed to take on a different perspective with regard to his financial and medical affairs. I do attribute it to the finality and realness of my mother’s passing and the fact that my father could no longer deny - to himself or to anyone else - exactly what was happening in his life. The first real breakthroughs came on the financial side, when my father finally agreed to talk to an attorney about his wishes for his property and his other financial matters, and he admitted that he knew he needed to create a will. Unquestionably, it was very helpful that the attorney he spoke with was one of my childhood friends, someone my father knew and remembered from my elementary school orchestra - someone he felt comfortable with, someone he knew he could trust. Still, despite going through all of the necessary details and specifics required for legally executing a will, my father remained less than cooperative about establishing something legal and tangible with regard to his health concerns. He had reached the point of acknowledging the fact that it should be done and needed to be done, but he still procrastinated when it came to actually doing it.

Again, over the course of my mother’s illness and in watching the gradual decline of my father’s physical well-being, I’d made a point of learning as much as I could about my rights and responsibilities, and just what I could or could not do within legal boundaries, given the fact that I didn’t have power of attorney for either of my parents. One item of particular interest was a document titled Five Wishes ©, a living will publication distributed by Aging with Dignity.

The Five Wishes © document is a unique type of living will that not only addresses the medical aspects of end-of-life care, but also addresses the personal, spiritual and emotional aspects of end-of-life care as well. I’d talked to my father many times about filling out a Five Wishes © document for himself as well as for my mother but he was never receptive to talking about it in any detail. One morning, after we were well into the process of drafting his will with my friend/attorney, my dad actually asked me what else he needed to do. Initially, I didn’t understand what he was asking me, but once I did understand, I was absolutely amazed and quite surprised. The fact that my father had progressed to being able to discuss his mortality with me was such a hurdle for both of us to conquer.

My father, being legally blind, certainly wasn’t able to read over the Five Wishes © document for himself but I was happy to read it to him and discuss the various questions with him. The purpose of Five Wishes © is to allow the individual to choose the person they want to make health care decisions on their behalf if the individual is not able to make them for themselves, to state what types of medical treatment the individual wants or doesn’t want and to state what specific information the individual wants to share with their loved ones. This type of empowerment was especially important to my father who, as a proud African American man,

had always been the decision maker for himself as well as his family. Being able to state exactly what he did or did not want gave him a sense of control and made him feel that the entire process was conducted on his own terms, not something specified or laid out by someone else.

As I read through each of the various components of the Five Wishes © booklet, my dad and I discussed everything in great detail. At some points, my dad would ask me to explain something a little more fully or differently, while other aspects of the form were so straightforward that no further explanation was required. In the end, some very important matters were discussed and decided upon and I finally had the tools I needed to make care decisions on my dad’s behalf that I knew, without question, were in line with what he wanted or didn’t want.

When my father reached the last stages of his illness and was ready to make his final transition, there were many aspects of his care that required my consent or a decision on my part. Given the things my dad and I had discussed and everything he outlined in his Five Wishes © document, it was always easy for me to say yes or no to a specific procedure and know that the decision was completely in line with my father’s wishes. Unquestionably, there were difficult moments and I had to give some decisions a second thought but I could always rest assured that my father’s wishes were being honored, no matter what the outcome. My father passed on April 19, 2006 with his family at his bedside, content with the knowledge that we’d made the right choices.

Summary

Discussing advance directives with patients can increase the chance that care at the end of life will be consistent with a patient’s goals and values and will enhance quality communication, decision making, and the patient and family’s opportunity to come to terms with death. Physicians and other health care professionals who care for African American patients must be willing to explain the advance care planning process while demonstrating sensitivity to these patients’ cultural values and beliefs. Equally important, it is imperative for African American patients and their families to not only have those "kitchen table conversations" but to take it a step further by utilizing documents that will ensure that their wishes are known and can therefore be followed.

As the medical community strives to improve care at the end of life, it is necessary to consider issues of cultural differences so that all patients can be served equally by the advance care planning movement. Medical professionals need to familiarize themselves with the literature on cross-cultural issues where religion, gender, age, socioeconomic status, ethnicity, sexual orientation, and acculturation status have been identified as features impacting end-of-life care decisions. It is always the patient who remains the expert on cultural knowledge and from whom the medical community must elicit personal preferences, and then follow through by respecting and honoring those preferences.

bibliography

Ramsey Gloria-APPEAL ( A Progressive Palliative Care Educational Curriculum for the Care of African Americans at Life’s End) curriculum, Patient Centered Decision Making , Module 5 2003, 1-9.

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