The discussions between families and healthcare providers regarding medical care decisions are affected by the medical care needed, and influenced by cultural norms, values and beliefs. Central to core values is an individual’s right to make life choices, especially health care choices.
The Patient Self Determination Act (PSDA) enacted in 1990 ensures your rights are protected, including the fundamental rights to treatment choices, consent to treatment, open communication with health care providers, and control over one’s own life and death. Although discussions regarding healthcare choices can be challenging, the impact can be even more challenging due to an individual’s illness or incapacity.
The PSDA provides an opportunity for you to decide now about the types and extent of healthcare you want to accept/refuse should you become incapacitated. Furthermore, the PSDA requires agencies that receive Medicaid/Medicare funding (e.g., hospitals, nursing homes) to ask you what treatments you will or will not accept.
Advance Care Planning (ACP), and Advance Directive build on the PSDA. Advance Care Planning is the process of planning for future healthcare should you become unable to communicate or incapacitated. When you are ready to document your decisions for future healthcare, an Advance Directive may be completed. An Advance Directive (living will) is a legal document that specifies what actions should be taken for your healthcare if you become unable to communicate or decide for yourself in the future, because of illness or incapacity.
A statewide initiative, the Pennsylvania Orders for Life–Sustain Treatment (POLST), highlights the importance of ACP. Individuals involved in POLST have noted ACP begins with a conversation between you and your health care provider. The conversation will highlight the advantages associated with beginning the planning process. The advantages include being able make informed decisions about your care. Family members also often find peace in knowing your wishes are being honored.
With an ACP, you may also be able to take advantage of hospice services. You may also include plans for the care of dependents (e.g., children) within an ACP. Finally, with an ACP in place, the transition from this life to the next is more peaceful. Although there are a number of advantages associated with having an ACP, many individuals are either not aware, or due to cultural/religious beliefs do not have a plan in place. For example, the rate of completion of an Advance Directive among African Americans is typically lower than that of Euro Americans.
Nurses play a critical role in providing information on the advantages of having an ACP. As a patient advocate, your nurse will, if necessary and with your approval, share your desires related to care with other health care team members.
The following case illustrates the role that nurses play. Family members of a gravely ill patient with no Advance Directive continuously requested their loved one be kept alive on a ventilator. A nurse working with the family found that the family made the requests because they could not pay for burial. Social services were contacted and facilitated coverage for a funeral.
Advance care planning (ACP) is a broader, less legally focused concept than that of advance directives. ACP encompasses the preparation of legal documents, and discussions within your family and physicians about future medical care decisions if you experience serious illnesses.
The development of an ACP occurs through an iterative process over time in order to: 1) discern your priorities, values, and goals of care and 2) engage a proxy who will participate in the health care decision making process at any time in the future when you are no longer able to make decisions. Decision-making capacity is a clinical judgment about a patient’s ability to make a health care decision at a point in time.
The person you appoint to make decisions about your care should know your wishes, feelings and value. The knowledge will help the individual to make the best decision on your behalf. An ACP may be initiated through a: 1) durable Power of Attorney (POA) in which a designated surrogate is assigned, or 2) Living Will.
Most state websites have free forms that you can use without an attorney to designate a POA for healthcare. For some states, the POA form is combined with a living will, and you can also specify your wishes for medical care. You may consult legal advice from an attorney if you have questions or extenuating circumstances. Some people are simply more comfortable going to an attorney to have the documents completed. In the state of Pennsylvania effective as of January 1, 2015, the required format for a Power Of Attorney (POA) document is the same as that of a Living Will. A non-healthcare POA requires two witness AND must be notarized if signed on or after January 1, 2015.
Early financial discussions and planning enables you to have your ACP wishes honored. Financial obligations should be mapped out. The first obligation is the cost of care. Other financial obligations to consider include unpaid debt (e.g., mortgages). Making decisions on who handles the bills and from what account will aid those tasked with managing your finances. Financial guidelines from National Institute on Aging below may be helpful to you.
1. Choose someone you trust to carry out your even if they differ from their own.
2. Asses your current financial state and compare it to your anticipated care needs.
3. Organize and review important documents (e.g., insurance policies).
4. Determine burial costs and how they will be handled.
5. Estimate costs of your disease process (e.g., cost of care, hospitalizations)
6. Be familiar with all your insurance coverage options and make plans to maximize them.
7. Get help from qualified financial/legal advisors.
8. Become familiar with government/community programs for which you may be eligible.
Below are websites that provide more Advance Care Planning/Advance Directive information.
www.agingwithdignity
www.caringinfo.org/files/public/outreach/African American Outreach Guide.PDF,
www.NHDD.org,
www.nia.nih.gov/health/publication/advance-care-planning
www.portal.state.pa.us/portal/server.pt/community/directory_of_services/
4984/advance_directives_ for_health_care?qid=39798655&rank=8
www.statelaws.findlaws.com
www.takechargeonline.org
Article compiled by Pittsburgh Black Nurses in Action (PBNIA): Jacqueline Blake, Joanne Boyd, Christin M. Duham, Linda D. Fleming Heath