Q: I have an advance directive, but is that enough? I want to have more say about my death. I don’t want to experience suffering, and I don’t want to burden my family. I’ve read about palliative sedation and would like to understand more about it. If I choose this, how do I state my intent?
A: In my experience as a hospice nurse, the most important advance directive is identifying a durable power of attorney for healthcare. This advance directive only comes into play when you can no longer speak for yourself, for example, a cognitively impaired individual due to advanced dementia or an individual who is not alert and oriented.
It is important to choose a legal decision maker that you trust can honor your wishes. Sometimes a close family member may not be the best choice. Have a frank discussion with the individual you choose so they understand what you want. Make sure they are comfortable with this role. Share your wishes and the name of your decision maker with your entire family. These proactive discussions can minimize conflict during a future stressful situation. It is never too early to have these conversations because none of us knows when a life-threatening or life-limiting event may occur. There are several tools and resources to help you at NHPCO CaringInfo.org under the advance care planning section. You can also download your state-specific advance directive documents on the NHPCO CaringInfo.org website.
Once you have a designated healthcare agent, you should make sure your physician and local hospital have a copy. It is a good idea to keep a copy accessible for your family during an emergency, so they can bring a copy to the emergency room or hospital. Keep in mind that emergency responders are required to perform heroic measures through your transport to an emergency room. If you are seriously ill, most states have a Physician Orders for Life Sustaining Treatments (POLST) document that can further define your treatment preferences. Your physician needs to sign this document. Emergency responders are protected from legal action when they honor the POLST document. You can learn more about your state’s POLST program and document at the National POLST Paradigm website. Some states are implementing electronic storage for POLST documents; otherwise, you will want to keep this document posted on your refrigerator, so it is easily accessible to emergency responders.
Hospice care addresses your concerns about being a burden to your family. You are entitled to access the hospice Medicare benefit when you are terminally ill. Medicaid and most commercial insurances provide a hospice benefit, too. Hospice provides team-based care to meet the needs of the individual and their family, including the relief of suffering and caregiver burden. Hospice provides bereavement services to your family for a minimum of 13 months after your death. Studies show that individuals receiving hospice care often live longer with a higher quality of life.
Your other question is about palliative sedation. "Palliative sedation refers to the use of medications to induce decreased or absent awareness in order to relieve otherwise intractable suffering at the end of life." The use of palliative sedation is rare. In my experience as a hospice nurse, I have seen palliative sedation used less than a handful of times. Palliative sedation is only used when all other options to relieve suffering have failed. Thankfully, the field of palliative and hospice medicine provides multiple modalities to alleviate suffering. These modes include a variety of medications that enhance each other’s effectiveness, as well as non-pharmacologic treatments. Alternative therapies such as massage therapy, Reiki, acupuncture, music, and pet therapy can reduce suffering. Psychosocial, emotional, and spiritual support also reduce intractable suffering.
In the rare instance where these modalities fail to relieve suffering, palliative sedation may be offered. The intent of palliative sedation is to relieve suffering, not to hasten death. Most hospitals and hospice programs have a palliative sedation policy and procedure that clearly defines the eligibility criteria and the need for informed consent from the patient or healthcare agent to use palliative sedation. Some hospitals or hospice programs may require a meeting with an ethics committee prior to use of palliative sedation. According to the American Academy of Palliative Medicine, “The level of sedation should be proportionate to the patient's level of distress.”
Let’s be clear. Palliative sedation is not intended to end one’s life. You would not likely “choose” palliative sedation. If you were among the rare instances where all other modalities to relieve intractable suffering had failed, your palliative care or hospice team would discuss this option with you and/or your health agent.
In summary, selecting a healthcare agent is the most important advance directive. It is important to make sure the individual understands and can carry out your wishes if you are unable to speak for yourself. It’s also a good idea to have a conversation with your whole family about your wishes to minimize conflict. You can learn more about advance care planning and advance directives at the NHPCO CaringInfo.org website. If you are seriously ill, a POLST document is a further safeguard to ensure your wishes are honored. Hospice is an excellent option to support you and your family when facing a terminal illness. Palliative sedation is rarely necessary and only used when all other mechanisms to relieve suffering are exhausted.
Lori Bishop, M.H.A., B.S.N., R.N., C.H.P.N., is a healthcare nurse executive focused on innovative and transformational interdisciplinary care delivery models for the vulnerable seriously ill population. Lori has an extensive clinical background in hospice and palliative care. Her current position is vice president of palliative and advanced care at the National Hospice and Palliative Care Organization.