Advance Directives

Preparing for Death with Dignity via Advance Directives

 

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Have you ever thought about how you are going to die? Will you die comfortably or tragically? Will death overtake you suddenly or perhaps be a slow, painful process? The uncertainties surrounding death abound, but one thing is for sure, it is inevitable. The subject of death can be an uncomfortable one for many people, for various reasons. Yet in medicine, death and dying are commonly encountered occurrences, particularly when dealing with patients within the geriatric population.

However, many elderly adults and their loved ones may not have given serious consideration to how their lives may end and how they will manage and react when that time comes. They are not prepared for the inevitable. But, preparation is just the thing they need, in order to make peace with death and dying. Advance directives are the key to being prepared. They encourage people to think about their own death and how to take some control over the process. For patients who want to prepare and learn more about developing an advance directive, they seek guidance from their healthcare provider. For this reason, healthcare providers need to be knowledgeable about advance directives and be able to advise their patients. The Agency for Healthcare Research and Quality (AHRQ) reported that only 12% of patients who had an advance directive involved their physician in its creation and 65% to 76% of providers were unaware that their patients had advance directives.[1]

For the patient that does not yet hold an advance directive, particularly if that patient is elderly, addressing this topic at the healthcare visit becomes particularly vital. As people age, their risk for developing any number of chronic diseases greatly increases. In fact, the AHRQ has determined that approximately 80% to 85% of people aged 65 and beyond, will eventually become ill and meet their demise related to a chronic illness. In particular, cerebrovascular and cardiovascular diseases, Alzheimer’s disease, diabetes, renal disease and obstructive pulmonary disease are the main culprits, as each lends itself to progressive declines in physiological and mental health and function over less predictable lengths of time. There can also be occasional exacerbations that may require hospital admission. [1] Furthermore, according to Dr. Peter Saul, in his presentation of “Dying in the 21st Century,” there are four main categories through which people face death. Because of these, advance directives are not only necessary, but should become a health initiative priority. They include: death related to frailty, organ failure in the case of chronic disease, terminal illness, and sudden (unexpected) death. [2]

What exactly is an advance directive? An advance directive consists of several components that document or help people to express their wishes regarding treatment actions to be taken if they were to become critically ill, involved in a serious accident, in a coma, or become severely cognitively impaired and therefore unable to express these wishes for themselves. The concept of the advance directive was created as a provision of the Omnibus Budget Reconciliation Act proposed in November 1990, in order to give patients a choice in the medical treatments they receive. Also, through the Patient Self-Determination Act passed by Congress in 1991, patients were empowered to become active participants in medical decisions “affecting the condition and length of their life,” including being able to accept or reject treatments and create an advance directive. [3, 4] The advance directive is formulated by patients, often in discussion with their loved ones, and/or healthcare provider, and/or pastor. Advance directive components include the living will, medical durable power of attorney, do-not-resuscitate (DNR) orders, Protective Medical Decisions Document (PMDD), and the Physician Orders for Life Sustaining Treatment (POLST).

The living will also known as a healthcare directive or declaration, is a document that contains the patients’ predetermined wishes regarding the treatment modalities and measures to sustain life they would want and expect for themselves, in any serious health situation where they were unable to express these needs themselves. [5] For example, a patient with a neurological disease may pre-express in the living will that if he/she were to one day end up in coma, he/she would not want to be given artificial nutrition or hydration via feeding tubes. Further, in this document, patients could state their wishes regarding the use of mechanical respiration ventilators, hemodialysis, and in the event of death, even donation of their organs. [5] The living will is initiated by the patient’s attending physician in the event of three concurrent occurrences: the patient has lost the ability to make medical decisions, the patient must have an end-stage illness or injury from which the person will most likely not recover, and that artificially sustaining the patient’s life will hinder the ability to die naturally. [6]

The medical or healthcare power of attorney (POA) is a document that identifies one particular person (such as a spouse or family member or close friend), named by the patient, to be the “agent” or “proxy” (also known as a “surrogate” or “representative”) to make decisions regarding treatment modalities, in the event that the person is seriously incapacitated and cannot speak for himself. The decision to choose an agent should be made with deliberation and thought, as the chosen one must be able to convey and abide by the patient’s predetermined wishes and make choices for the patient in any unforeseen situation. If this were to happen, the agent would then be able to make unbiased decisions, on the patient’s behalf, based on knowledge of the patient’s values and wishes. [5] Additionally, a person may consider a second or even a third agent in the event the first one named is not available or is unable to make the necessary decisions. [6]deathbed

The PMDD is a written form of the durable power of attorney for healthcare (DPOA). Available through the Patients’ Rights Council, its purpose is similar to that of the medical POA. However, the PMDD goes one step beyond, by providing patients with increased protection (in the event of their decision making incapacity) against an agent who decides to terminate their (patients’) lives directly and intentionally, via assisted suicide or euthanasia. Besides the primary agent, alternative representing agents may be named in the PMDD, as well. [7]

The DNR order is written by a physician. It states the patients’ wishes as to whether or not they would want cardiopulmonary resuscitation (CPR) in the event they sustained cardiac or pulmonary arrest. The DNR may exist in two forms; one that addresses the CPR situation within the hospital setting and another for pre-hospital CPR situations, such as at home or in a nursing facility. [8]

Finally, the POLST is a standardized form initiated by physicians with their patients, in order to document the patients’ wishes regarding certain types of life sustaining treatments they desire or do not wish to have when their health condition is serious and they are unable to express what they want (at that time). Signed by both the physician and patient, it becomes part of the medical record, thereby making it portable and valid in any locality that patients may be in, even if they were to experience a serious health crisis when away from home. [9]

When a patient without an advance directive is hospitalized with a serious medical condition and unable to communicate, physicians must delegate that responsibility to whomever they deem appropriate to make choices on behalf of the patient. Usually this is the patient’s next of kin. Given that physicians are often unaware of patients’ wishes or who their choice of agent would have been, the doctors will make that decision for the patients. But later, if the doctors do not agree with the choices made by the agent whom they have chosen, they may then feel free to choose another. [10] This whole situation can be turned around by having an advance directive ready and available. Then, if doctors are in disagreement with the patients’ or their agent’s decisions, under federal law, doctors are required to inform the patients or their agent of that in advance at time of potential admission. In states such as Texas with an even more stringent law, doctors/facilities must render care even if they consider it to be “futile care” until provisions can be made to transfer the patient to another facility or physician who will honor the patient or agent’s choices. [10]

The responsibility for the development of a patient’s advance directive lies not only with the patient, but ultimately with the patients’ healthcare provider, as this is a very important component of the patient’s comprehensive health care. In preparation for addressing this issue with the provider patients should contemplate and discuss various items with their trusted loved ones including: [6]

  • Their attitudes towards life, including activities that bring them joy and situations they fear
  • Their attitudes about potentially losing control and independence
  • How their attitudes may be influenced by religious beliefs
  • Their attitudes towards being seriously ill or injured
  • Their attitudes regarding overall health, being ill, dying, and death
  • Their understanding of the choices for medical treatment, in the event of serious illness or injury
  • Their feelings about being unable to communicate their wishes should they become brain dead, go into a perpetual coma, or become terminally ill
  • Their feelings about having healthcare providers make treatment decisions independent of the wishes of patients
  • Informing their loved ones of their expectations for treatment at the end of life
  • Informing loved ones of their fears and concerns regarding treatments under certain circumstances
  • Knowing how their loved ones would feel about the patient’s advance directive choices and if they could respect them
  • Selecting their primary medical POA and alternates based upon the knowledge that their chosen agents clearly understand the reasons behind the patient’s beliefs and decisions and could be trusted to abide by their wishes
  • Determining if their chosen agents would be willing to accept this responsibility
  • Ensuring that their agents understand the patient’s current health conditions, how these conditions could negatively progress, treatment options available,  adverse effects of these treatments, and prognosis with and without treatment including measures that may be used to prolong and sustain life
  • Their idea of what “quality of life” means to them
  • Their idea of what “dying with dignity” and “no heroic measures” means to them
  • Their thoughts about pain and their expectations regarding how their pain should be managed
  • Ensuring that they are informed about pain management options and effects
  • Their thoughts about life after death and how that thought may influence their advance directive choices
  • Discovering if they have any obstacles discussing issues regarding advance directives
  • Being aware of both their own and their loved ones’ understanding of the purpose of an advance directive

Healthcare providers, on the other hand, need to prepare to discuss advance directives with their patients by first being aware of their own feelings regarding the issues involved. Next, they must increase their own comfort level when discussing this topic with their patients. According to the results of patient surveys regarding advance directives, “most adults would prefer to discuss advance directives while they are well, preferably with a doctor who has known them over time…they look to their doctors to initiate the discussion”. [11] Yet, only approximately 15% to 25% of adults have actually completed advanced directives usually after hospitalization with a serious illness. [11] Further, a study of outpatients aged 65 years and older has determined that “a doctor’s inquiry increased two- to three-fold the chances that individuals would have an advance directive on file with their health plan”. [11]

Drs. Zwieg and Mehr from the University of Missouri-Columbia School of Medicine recommend that end-of-life care discussions between healthcare providers, their patients, and their families should consist of four main components. First, patient preferences should be determined. This could include their thoughts on treatments they want and those that they don’t. Second, prognosis for disease states that patients are experiencing should be discussed. This could include thoughts on how much time certain treatments or procedures would buy patients, as well as how these may affect their quality of life. Third, the goals of providing such treatments and procedures should be addressed. This could include knowing not only the outcomes hoping to be achieved, but also informing patients of the benefits, risks and even the financial cost involved. Lastly, a management plan should be developed keeping patients’ goals in the forefront. This could include advance directives that permit both broad and specific decisions to be made in various circumstances of serious illness and/or injury and death. [12]

Overall, it is most important for healthcare providers to be respectful and emotionally supportive of their patients’ choices. In discussing advance directives, providers must be aware of patients’ values and goals. [13] They should address any concerns, questions, and fears that patients and their families and/or agent’s may have and supply information necessary to make informed decisions.  Also, providers should keep a copy of advance directives in the patient’s medical record. Patients should be reminded to give copies to their primary agent and alternates, children, and any other people who need to know the patient’s wishes. Copies can be filed, without cost, at patients’ local hospitals. [6]

Of course, patients should be aware that they can change their advance care decisions if ever the need arises. Usually this will require destroying the original and copies of the old advance directives and replacing them with the updated ones. Living wills and medical power of attorney usually require two witnesses (one may need to be a notary) to observe the patient’s signing and dating the advance directive. [6] Patients should check their state regulations for guidance regarding the creation of advance directives (or consult the National Hospice and Palliative Care Organization’s website). [14] A lawyer is not required for this process. [5] Advance directives should be reviewed each year, dated and initialed. The original should be readily available when needed. Additionally a card stating that patients have advance directives should be kept in their wallet, in case of an emergency. [6]

Having an advance directive is a vitally important part of the healthcare plan. Healthcare providers need to make the time to address this topic with their patients. Advance directives will not only lessen their patients’ suffering and increase their peace of mind, but they will also provide a sense of autonomy and control over their death. [8] Additionally, they can take away some of the frustration, stress, confusion, guilt, and uncertainty for loved ones who are faced with the patient’s terminal situation. [15] Death and dying can be uncomfortable subjects to confront, but as healthcare providers, we must be able to do so every day. Providers may even teach by example by having an advance directive of their own. As was said by the late Dame Cicely Saunders, founder of the modern hospice movement, “You matter because you are you and you matter until the last moment of your life”. [16]


Karen Digby, BA, BSN, MS, GNP-BC, CWS

GNP Independent Contractor/Writer
Ann Arbor, Michigan

Published on November 26, 2013

 

Biosketch

Karen Digby is a nurse practitioner specializing in geriatrics. She received her training from New York University and the University of Michigan in Ann Arbor. In over ten years of practice, Karen has obtained a wealth of experience in various aspects of health care including home care, outpatient/ambulatory care, dementia care, subacute care, hospice, and assisted living and long-term care. Due to her expertise in geriatrics, Karen was selected as an item writer, by the American Nurses Credentialing Center, for the Gerontological Nurse Practitioner Board Certification Examination. She also co-authored an article on “Falls in the Elderly” in the Plastic Surgical Nursing Journal. Additionally, Karen is certified as a Wound Care Specialist through the American Academy of Wound Management.

References

  1. Kass-Bartelmes BL, Hughes R, Rutherford MK. Advance care planning: preferences for care at the end of life. Rockville (MD): Agency for Healthcare Research and Quality; 2003. Research in Action Issue #12. AHRQ Pub No. 03-0018. http://www.ahrq.gov/research/findings/factsheets/aging/endliferia/index.html
  2. Dr. Peter Saul. Dying in the 21st Century. TED Talk (TED x Newy). 2011. http://www.youtube.com/watch?feature=player_embedded&v=03h0dNZoxr8
  3. Department of Health and Human Services. Office of the Inspector General. Patient advance directives: early implementation experience. August 1993. http://oig.hhs.gov/oei/reports/oei-06-91-01130.pdf
  4. Rosen A, O’Neill J. Social work roles and opportunities in advance directives and health care decision making. National Association of Social Workers. March 1998. http://www.socialworkers.org/practice/aging/advdirct.asp
  5. Mayo Clinic. Consumer health. Living wills and advance directives for medical decisions. http://www.mayoclinic.com/health/living-wills/HA00014
  6. Advance medical directives. http://www.cpt.org/files/PP%20-%20Advance%20Directives.pdf
  7. Patients Right Council. Advance directive: protective medical decisions document. http://www.patientsrightscouncil.org/site/advance-directive-protective-medical-decisions-document/
  8. What is an advance health care directive? http://fcasocal.org/advance-directives.html
  9. Pope TM, Hexum M. Legal briefing: POLST: physician orders for life-sustaining treatment. J Clin Ethics. 2012 Winter;23(4):353-376.
  10. Marker RL. Patients Rights Council. Advance directive: protecting yourself and your family (part 2).  http://www.patientsrightscouncil.org/site/advance-directive-protecting-yourself-and-your-family-part-two/
  11. Wissow LS, Belote A, Kramer W, Compton-Phillips A, Kritzler R, Weiner JP. Promoting advance directives among elderly primary care patients. J Gen Intern Med. 2004 Sep;19(9):944-951.
  12. Zweig S, Mehr DR. Helping older patients and their families decide about end-of-life care. Missouri Medicine. 2003 Jan-Feb: 100(1): 62-28.
  13. Fischer GS, Arnold RM, Tulsky JA. Talking to the older adult about advance directives. Clin Geriatr Med. 2000 May;16(2):239-254.
  14. National Hospice and Palliative Care Organization. http://www.caringinfo.org/i4a/pages/index.cfm?pageid=1
  15. Span P. Why do we avoid advance directives? The New York Times. April 20, 2009. http://newoldage.blogs.nytimes.com/2009/04/20/why-do-we-avoid-advance-directives
  16. Clark D. Cicely Saunders: Selected writings 1958-2004. New York, NY: Oxford University Press, 2006.
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