Everyone should have the opportunity to live their whole lives on their terms, including the times when they are dealing with advanced illness or are close to the end of their lives. The Office of the Ombudsman is committed to ensuring that residents, families, and staff have the tools and supports they need to make care and treatment decisions that are aligned with individual residents’ goals of care. We seek to achieve this goal in a number of ways.
Advance care planning is an ongoing process of communication and negotiation among an individual, her loved ones, and her care providers that seeks to align goals of care – what quality of life looks like to her – and her treatment decisions. It is the opportunity for an individual to declare what quality of life looks like to her and insist that she gets treatment and care necessary to achieve that quality of life.
Successful advance care planning requires effective communication with health care providers and loved ones about your health and your goals, reflection on what is important to you and what a good life looks like to you, choosing the right person to speak you in case you are unable, documentation of those goals in some way, such as an advance directive, POLST (Practitioner Order for Life-Sustaining Treatment), and revisiting your plans.
The time to start is before you are in a crisis…like right now. Yes, the plans will change as your goals and values change and as your health changes.
Think. Talk. Do. Repeat.
OOIE Advance Care Planning Flyer (pdf)
- PREPARE: https://www.prepareforyourcare.org
- The Conversation Project: http://theconversationproject.org
- Engage with Grace: http://www.engagewithgrace.org
- 5 Wishes: http://www.agingwithdignity.org/five-wishes.php
- Caring Conversations: http://practicalbioethics.org/resources/caring-conversations.html
- American Bar Association: http://www.americanbar.org/groups/law_aging/publications.html
- Your Life Your Choices: http://www.rihlp.org/pubs/Your_life_your_choices.pdf
- POLST form: http://www.njha.com/media/84188/NJPOLSTFORM.pdf
- NJ Department of Health POLST information: http://www.nj.gov/health/advancedirective/polst.shtml
- NJ Hospital Association POLST information: http://www.njha.com/quality-patient-safety/advanced-care-planning/polst/
- Coalition for Compassionate Care of California: http://coalitionccc.org/nursing-homes.php
- Advancing Excellence in America’s Nursing Homes: Goal 6 – Advance Care Planning http://www.nhqualitycampaign.org/star_index.aspx?controls=resByGoal
- INTERACT II: http://www.interact2.net/tools.html
- Hospice & Palliative Nurses Association TIPS Sheets: http://www.hpna.org/DisplayPage.aspx?Title=TIPS
Unfortunately, there will be times when an individual has not made their wishes known, and they, their families, and their care providers will likely face difficult decisions about care and treatment.
Decisions can include whether to provide or remove particular treatments, such as dialysis or artificial nutrition, adjust medications, or refer to palliative care or hospice.
For individuals in long-term care communities, the Ombudsman provides support and ensures that decision-making is resident-focused and consistent with ethical and legal standards.
One way the Ombudsman does this is through Regional Ethics Committees (RECs). RECs provide an impartial, comprehensive evaluation and assessment of the situation and offer non-binding recommendations to the individuals involved.
RECs provide much-needed education, conflict resolution, and ethical guidance to facilities and families when difficult decisions need to be made.
Palliative care is specialized care that seeks to relieve suffering and give people the ability to live their lives to the fullest extent possible as they deal with their disease.
Palliative care is specialized care for people with serious illnesses. It focuses on providing patients with relief from the symptoms, pain, and stress of a serious illness—whatever the diagnosis provided by an interdisciplinary team (including doctors, nurses, social workers and, based on patient need, other specialists like clergy and therapists). The goal is to improve quality of life for both the patient and the family. Hospice, which provides these supports to individuals toward the end of their lives, is the most well-known form of palliative care but palliative care is available and beneficial to people at all stages of illness.
Get Palliative Care: http://www.getpalliativecare.org
New Jersey Hospice and Palliative Care Organization http://www.njhpco.org
National Hospice and Palliative Care Organization’s Caring Connections website: http://www.caringinfo.org/i4a/pages/index.cfm?pageid=1
CMS Hospice Booklet: http://www.medicare.gov/publications/Pubs/pdf/02154.pdf
National Healthcare Decisions Day http://www.nhdd.org/