During the Pandemic, Compassion & Choices advocated for legislative and regulatory changes so that telehealth would be allowed for common end-of-life services. Now, we seek legislative action to make those provisions permanent.
Why does Compassion & Choices advocate for the use of telehealth at life’s end?
During the pandemic, as hospitals filled their beds with patients stricken from COVID, we received countless calls from patients who could not access the end-of-life care they needed for other terminal diseases. Other patients wanted to be able to engage in thoughtful advance care planning discussions with providers; however, in-person visits were no longer a safe option. In response, we began advocating for improvements to our nation’s telehealth laws with a focus on improvements that would benefit terminally ill patients and those who wanted to engage in advance care planning.
What Changed During the Pandemic?
The Coronavirus Aid, Relief and Economic Security (CARES) Act package included key provisions related to telehealth that improved the delivery of end-of-life care for everybody, especially historically disadvantaged populations and those who live in rural areas with limited access to health care. By receiving care in the convenience of their own home, patients didn't have to endure the challenges and risks associated with in-office visits. These provisions were a lifeline for patients with:
- compromised immune systems
- those who cannot travel easily,
- those challenged with mobility issues, and
- those who live in remote areas
The pandemic demonstrated to us that telehealth could be a much more important part of end-of-life care, resulting in patients spending more time with families and less time in transit. It is not a solution for all end-of-life care, but rather an important tool in the toolbox. However, the changes that were made were all temporary. So unless they are made permanent, we will return to the largely brick and mortar care we received pre-pandemic.
On May 11, 2023, the COVID-19 public health emergency declaration ends. The following waivers from the pandemic have been extended via the Consolidated Appropriations Act of 2023. These policies will continue until December 24, 2024.
- Medicare beneficiaries can receive coverage for telehealth services, regardless of the patient’s geographic area. Prior to the declaration, only those in rural areas could receive this coverage.
- Medicare coverage will include audio-only telehealth services (such as phone calls). Prior to the declaration, only two-way, realtime audio/video telehealth services were allowed. Although many people may prefer audio/video access, some individuals, particularly those with lower incomes, may not have consistent access to video.
- Hospice care providers may continue to recertify the patient’s eligibility via telehealth. Recertification is needed when someone enrolled in hospice continues to need hospice services after being enrolled in a hospice program for the initial six months.
While these extensions are positive steps for telehealth use related to end-of-life care, there are some areas that have not been expanded. Under the Ryan Haight Online Pharmacy Consumer Protection Act, medical providers are required to conduct an in-person patient examination prior to using telehealth to prescribe controlled substances. This requirement was waived under the COVID-19 Public Health Emergency Declaration. However, when the Emergency Declaration expires (and if this waiver has not otherwise been extended), that provision of the Ryan Haight Act will be in effect again.
The federal Drug Enforcement Agency (DEA) has proposed new regulations related to the Act. We are tracking the rulemaking process to ensure end-of-life options available by telehealth are protected (for example, adequate pain control, continuity of care, and palliative care access for patients in areas with provider shortages).
What is Compassion & Choices Advocating for Now?
Compassion & Choices submitted a comment to the DEA’s proposed rule advocating for an exemption for telemedicine services for people at the end of life. We also encouraged supporters and healthcare providers to let the DEA know that the proposed rule would lead to greater suffering for people at the end of life. Read more here.
Compassion & Choices supports legislation that makes permanent key healthcare provisions from the ‘‘Coronavirus Aid, Relief, and Economic Security Act’’ or “CARES Act” (H.R. 748). These key provisions include:
- Use of telehealth to certify and recertify hospice eligibility, which is necessary to allow continued Medicare coverage if an individual requires extended end of life services beyond the initial six months. (Sec 3706).
- Use of Health Resources and Services Administration (HRSA) grant programs that promote use of telehealth technologies (Sec 3212).
- Waiving of the deductible for healthcare and other remote services for employee benefit plans covered by Employee Retirement Income Security Act (ERISA) health plans. (Sec 3701)
- Expanding telehealth use for federally-qualified health centers and rural health clinics (Sec 3704), including payment for effective audio-only services.
- Expanding the type of providers allowed to conduct and bill for telehealth visits to include advanced practice registered nurses, registered nurses, nurse assistants and licensed vocational nurses (Sec 3703).
These changes will help ensure more people, particularly those most medically vulnerable, will have access to quality healthcare, without having to spend their final days and months burdened by countless unnecessary healthcare appointments or even worse, unable to access care at all.
Note: While telehealth is available for medical aid in dying in some jurisdictions, clinicians should be aware of residency requirements and related legal immunities.
Resources
The Need for Telehealth Has Never Been Greater
Group Praises Congressional Leaders for Expanding Access to Telehealth Services During Coronavirus Crisis
Why Does Advance Care Planning Matter?
Advance care planning helps ensure future medical treatment conforms with an individual's beliefs and values, mitigates bias to ensure people get the full breadth of care they want, and protects against excessive, unwanted treatment. Not having documentation of your end-of-life care plans and wishes could mean:
- Physicians and family members may be left to make uninformed, agonizing, life-and-death decisions
- Potentially receiving excessive and unwanted care which could reduce quality of life.
- Prolonging suffering, making those last months, weeks and days difficult for you and your loved ones.
- Potentially not getting the care that you would want.
What is an Advance Directive?
Advance directive is a general term for any document that contains instructions pertaining to a person’s wishes related to medical treatment if they can not make care decisions on their own. Everyone over 18 should have an advance directive to increase the likelihood you will get the care you want. Common advance directives include:
- a living will (“what I want”)
- a medical durable power of attorney (“who will speak for me”) - this person is sometimes referred to as a health care proxy
- Do not resuscitate and do not intubate orders; simple orders indicating when or if you want this care.
- POLST: Portable Medical Order (described below)
In most states, a lawyer is not required to fill out an advance directive; one simply needs to sign in front of the required witnesses. Advance directives are one important output of advance care planning; however, they are not the only aspect. Understanding and communicating your priorities are just as important.
How Do I Get Started with Advance Care Planning?
Our end-of-life decisions guide is an excellent place to get started. In short, below are the steps involved in advance care planning.
- Think about your wishes for future care if you become seriously ill. Your wishes may be shaped by your experiences, cultural and religious views, your values and your goals.
- Select a healthcare agent – someone that you trust to make medical decisions for you if you can’t make them yourself.
- Discuss your wishes with your healthcare agent and other loved ones. This step is sometimes difficult, but it is very important and may help avoid future conflicts.
- Complete an Advance Care Planning document, like an Advance Directive. In some situations, a health care provider might suggest also completing a Physician Order for Life-Sustaining Treatment (POLST) form.
- Make copies and share copies with your healthcare agent, physicians and loved ones. Make sure that your Advance Directive is in your medical record.
- Periodically reviewing your Advance Care Planning documents to be sure names, contact information and healthcare wishes haven’t changed.
What is a POLST: Portable Medical Order?
POLST has different names in different states. At the national level, it is currently called POLST: Portable Medical Orders, or POLST for short. A POLST:
- Is a medical order created by your physician through a process of shared-decision making.
- Reflects the types of life-sustaining treatments– such as CPR or tube-feeding– that a patient wants or doesn’t want based on their diagnosis, prognosis, values, beliefs and goals for care.
- Is a part of advance care planning that is designed for patients with serious illness or frailty, for whom a healthcare professional would not be surprised if the patient died within one year.
- Is created by a medical provider; in some states, the patient or designated surrogate signs it.
- A means to translate advance directive decisions into physician orders that all medical personnel follow for people who are within a year of death.
A POLST is not an advance directive and does not substitute for naming a health care agent or durable power of attorney for health care.
Currently, only about half of all states have POLST forms available. Make sure to check with your physician about whether or not your state uses a version of POLST.
Other common names for POLST are:
- physician orders for life-sustaining treatment
- portable orders for Life-Sustaining Treatment
- provider orders for Life-Sustaining Treatment
- medical orders for Life-Sustaining Treatment
For more information about POLST, see National POLST.
What is a DNR?
DNR means "Do Not Resuscitate." DNR orders are written instructions telling healthcare providers not to perform Cardiopulmonary Resuscitation (CPR). CPR uses mouth-to-mouth or machine breathing and chest compressions to restore the work of the heart and lungs when someone's heart or breathing has stopped. It is an emergency rescue technique that was developed to save the life of people who are generally in good health
During CPR, you may receive compressions (pushing) on your chest or electrical shock and drugs to restart your heart. In a small number of cases, CPR can save a patient's life and allow them to recover fully and leave the hospital. However, the likelihood of surviving resuscitation for chronically ill elderly patients is very low.
- CPR recovery. After CPR, more likely than not, you will need to be moved to the ICU. You may also have damaged or broken ribs caused by chest compressions. If your heart and breathing are stopped for a while, brain damage may occur.
- CPR survival. Research suggests that only 10–20% of all people who get CPR will survive and recover enough to leave the hospital. For chronically ill elderly patients, one study has shown a less than 5% chance of surviving long enough to leave the hospital after receiving CPR. The study does not evaluate the quality of life for those who leave the hospital.
Patients who do not want CPR should fill out a DNR order, making sure that it is on the proper color paper. If you do not have a DNR order, healthcare providers will begin CPR in an emergency.
What are Do Not Intubate Orders?
Intubation with ventilation is for people who are severely ill and not able to breathe on their own. It is used when other methods of treatment are no longer working. The procedure is performed in the hospital. You’ll remain in the intensive care unit (ICU) throughout the ventilation process.
For intubation, a tube goes into your mouth or nose, down your throat and into your windpipe. It is connected to a machine called a ventilator. You cannot speak or swallow. You would be in a medically induced coma and given pain-relieving medications before and throughout the process.
Ventilation is a life support treatment. It pushes oxygen into your lungs to help you breathe and into your heart and kidneys so they can work properly. Ventilation helps keep you alive, giving the lungs a longer time to recover on their own. It essentially buys time.
Intubation with ventilation will extend your life and may allow you to recover. However, it is an invasive procedure that has the potential to diminish the quality of life for those who do survive. People least likely to recover are those who are seriously ill from heart, lung, liver or kidney failure, who are over age 65, or who have a terminal illness like cancer or advanced dementia.
If you do not want to be intubated, you should fill out a Do Not Intubate order. Otherwise, you will likely be intubated.
What are the Limitations of Advance Directives?
Below is an excerpt from Finish Strong based on a 2016 oped by Kim Callinan outlining the limitations of Advance Directives.
An advance directive may provide peace of mind by explaining to your doctors and family what healthcare you would prefer to receive if you become incapacitated. But unfortunately, they do little to prevent the kind of futile overtreatment most people wish to avoid. There is increasing understanding that people’s advance directives alone are not enough to ensure that people’s end-of-life goals, priorities and values are honored. Some of the reasons advance directives fail include:
- Limited applicability: Standard advance directives take effect only when one of two conditions is established: 1) terminal illness and 2) permanent unconsciousness. Confirming that a person is definitely in one of those two categories may take days or weeks, during which time an unwanted hospitalization and much avoidable suffering may have already occurred. The wording of those documents encourages hopeful thinking about forestalling imminent death and restoring absent brain function.
- Lack of dialogue: Instructions on paper are mostly ineffective unless the people authorized to give them the effect know in advance what the instructions say. The unconscious person and health care proxy often have not discussed the goals, preferences and values outlined in the advance directive. In fact, fewer than three in ten people have actually talked with their loved ones about end-of-life care, according to a survey conducted by the Conversation Project.
- Lack of relevance. Since advance directives are, by definition, written in advance - sometimes many years in advance - they often lack relevance to current events and the circumstances in place at the time the documents are needed.
- Lack of access. It is all too common that an advanced directive along with the DNR order is locked away in a desk or safe when a life-threatening emergency arises, leaving family members and medical providers unsure whether they even exist.
- Lack of enforcement: Doctors are not held accountable for following (or not following) advance directives. In fact, most states grant doctors legal protection for either following the instructions in an advance directive or not following them. Until the documents include enforcement mechanisms, physicians have little incentive to follow them. They are more likely to revert to training, to do everything possible to keep a terminally ill person alive, regardless of whether the treatment only prolongs an agonizing dying process.
Are There Ways to Increase the Likelihood my Advance Directive will be Honored?
The most important ways to increase the likelihood your advance directive will be honored is:
- Select a healthcare proxy who is a strong advocate and will honor your wishes. Have regular and frequent conversations about the care you want and don’t want and share your advance directions, any addendums and the values and priorities worksheet from our End-of-Life Planning guide.
- Share your advance directive with any friend or family member who may be present at the end and make sure they are clear about your priorities; if any family member seems unwilling to honor your wishes, specifically note in your advance directive that you do not want them to speak for you.
- Consider videotaping your advance directive as one additional confirmation of your wishes.
- Set up an appointment with your provider to review your advance directive and confirm they will honor your request; ask them to add it to your medical record.
- Share your advance directive with any hospitals in the area and ask them to include it in your medical record.
In addition to filling out the forms noted above, we’d also recommend you consider the following:
- Dementia Addendum: a Compassion & Choices exclusive online tool that creates a customized addendum to your advance directive to direct your care should dementia take hold.
- Sectarian Healthcare Directive is an addendum to clarify that your wishes supersede those of any institution’s religious policies and that you wish to be transferred if any facility refuses to follow the preferences you’ve outlined in your advance directive.
- Hospital Visitation Form gives unmarried couples hospital visitation authorization.
- Assisted Living Facility (ALF) Rider is a contract rider for people who live in assisted-living facilities and would like to stay there until they die. This will ensure an individual’s home is suited to their choices.
