Advance care planning
The best time to hold discussions about end-of-life care with patients particularly those with chronic conditions is before the patient becomes “terminally ill”. It is beneficial to bring in the family /proxy in these discussions so everybody gains a better understanding of the patient’s personal treatment preferences under certain situations.  It may also provide the physician an opportunity to discuss the patient’s as well as the family’s concerns or fears and reconcile their differences about end-of-life care.

Typically, advance care planning involves preparing for end-of-life issues and ideally includes the completion of a living will, a durable power of attorney for healthcare (DPAHC), and specific end-of-life treatment preferences (ELTP). A living will is a written statement of a patient’s wish about the type of care to have or not to have, or to withhold or withdraw life-sustaining treatment if they became terminally ill. Currently, these provisions vary from state to state. In New Jersey, under the N.J. Stat § 26:2H-53, (New Jersey Advance Directives for Healthcare Act)  the advance directive/living will becomes operational when the patient no longer has the ability to make decisions about his/her health care

The important difference, however, between a living will and a DPAHC is that the living will gives instructions about end-of-life care preferences without appointing a healthcare representative. In contrast, a DPAHC is a legal document that allows individuals to designate a person to make medical decisions for them if they are unable to do so. The DPAHC is less specific than a living will and applies to all situations in which patients are incompetent and unable to make their own decisions.[1]

End of Life Treatment Preferences (ELTP)
Making the decision regarding ELTP is always difficult; however, an early understanding of the patient’s preferences and treatment goals eventually spares everyone the difficult task of second guessing the patient’s wishes. The decision on the goal of treatment, options, and alternatives and how aggressive the treatment should be are discussed with the patient and the family/proxy. Addressing these preferences before an acute event eliminates the stress and emotional burden that are associated with the illness and makes the family feel comfortable and confident that they have carried out the preferences of their loved one. This fosters shared end-of life decision making.[2]

Prior to talking with a family/proxy, it is critical that the physician and healthcare team agree with the information and how it will be provided so that the family is not confused by different options and opinions. The options should always include alternatives including a choice of palliative or comfort care, and a reminder to the family/patient that refusing a medical intervention does not mean that no care or no further treatment will be given. It is also important to inform the patient and family that palliative care is a form of treatment.

When discussing palliative care in the context of ELTP, it may be helpful to provide the family/proxy with information about resources, such as hospice care or chaplain services.  It is essential to reiterate that the goal of treatment is comprehensive care focused on comfort and optimizing the quality of remaining life.

Do Not Resuscitate (DNR) or Allow Natural Death (AND)
The 1990 Patient Self Determination Act (PSDA) has encouraged physicians and hospitals to ask patients about their advance directive and establish whether the patient requests a do-not-resuscitate (DNR) order. The act requires Medicare and Medicaid providers to give adult individuals information regarding their right to direct their own health care decisions, the right to accept or refuse medical treatment as well as the right to prepare an advance directive. This regulation provided the impetus for discussing and clarifying patient’s treatment preferences in the event of a catastrophic illness.  It is almost two decades after the enactment of the PSDA and hopefully physicians and other healthcare providers are more comfortable in discussing end-of-life treatment preferences.

Today, a new trend is emerging for healthcare providers to encourage patients to declare an acceptance of natural death (Allow Natural Death, AND) when medical interventions are deemed medically futile. It is allowing nature in essence to take its own course. Increasingly, these decisions are being noted on charts within all healthcare settings, i.e., hospitals, nursing homes, hospice and home health settings.

The concept of “AND” is gaining acceptance in health care and seems to be the preferred term. Proponents of the term “AND” suggest that it is a more positive and compassionate approach to death and dying while “DNR” as a terminology has a negative connotation which occasionally can be construed as “do not treat”. The National Hospice and Palliative Care Organization has developed criteria (CARING) to identify patients who might benefit from a palliative approach to care.[3]

As in any of these situations, a frank discussion of death and end of life issues should be initiated when the patient is still well enough to make his or her preferences known to the physician and his/her family.

[1] Nia.nih.org
[2] Syndney M Dy; Gary Shapiro: Beyond Futility:
Good Shared End-of-Life Decision-Making Takes Ongoing Discussions,
Realistic Goals Oncology. Vol. 22. No.8 July 1, 2008
[3] National Hospice and Palliative Care Organization website:
www.nhpco.org