End-of-Life Choice, Death with Dignity, Palliative Care and Counseling

Posts TaggedRight to Know

Case Against For-Profit Hospice Goes Forward

Vitas Allowed Terminally Ill Woman to Die in Agony

PORTLAND, OR – Compassion & Choices, the nation’s oldest and largest nonprofit organization working to improve care and expand choice at the end of life, today applauded the decision to let the Hargett v. Vitas case proceed. Judge Dennis Hayashi of Alameda Superior Court denied the motion for dismissal by Vitas Hospice, the nation’s largest for-profit hospice chain. The parents of Michelle Hargett-Beebee brought the lawsuit. Michelle was a Los Gatos mother of three young children who, while under the care of Vitas Hospice, died a painful death from pancreatic cancer in December 2009.

The lawsuit seeks accountability from Vitas Hospice for its reckless failure to treat Michelle’s pain as she died and for its failure to inform her of an option that could have spared her days of unrelieved agony. If informed, Michelle could have chosen a medical intervention called “palliative sedation.” The California Right to Know End-of-Life Options Act (Right to Know Act) requires that healthcare providers inform terminal patients, upon request, of all their end-of-life options. Vitas failed to do so.

Jim Geagan and Kathryn Tucker, who represent the plaintiffs, expressed satisfaction that the case would go forward. Geagan is a noted California trial attorney; Tucker is Director of Legal Affairs for Compassion & Choices. “This is an important case testing whether failure to inform a terminally ill patient with intractable pain about palliative sedation is outside best medical practice,” said Tucker. Tucker and Geagan have successfully achieved accountability in other cases involving inadequate end-of-life care, most notably in Bergman v Chin, also filed in Alameda County. Bergman was the first case in the nation to hold a physician accountable for elder abuse in failing to properly treat pain associated with terminal cancer.

Vitas had moved the case be dismissed, arguing that Michelle was not a “dependent adult,” nor was Vitas a “custodial caregiver,” in the meaning of the California Elder and Dependent Adult Abuse Act. The plaintiffs responded that Vitas’ own records reflect its awareness that Michelle needed help with most every activity of daily living including dressing, feeding and toileting.

Vitas also argued the suit alleged “no egregious acts.” Whether Vitas acted egregiously is a matter of judgment, appropriate for trial, the plaintiffs argued. They allege Vitas never brought Michelle’s pain under control, that they provided insufficient pain medication, that upward adjustments in the amount of pain medication were miserly. Neither Michelle nor her parents learned of palliative sedation, despite the fact the Right to Know Act was in effect at the time and that Michelle was exactly the type of patient for whom this intervention would have been appropriate to consider.

Right-To-Know Laws Empower Patients To Make Their Own End-Of-Life Decisions

By Kathryn Tucker
Director of Legal Affairs for Compassion & Choices

Compassion & Choices is dedicated to improving care and expanding choice at the end-of-life. We believe that patients are able to make the best choice for their care when they are fully informed of all end of life options. We support the enactment of policies and laws that ensure comprehensive counseling regarding end of life care options, including laws referred to as “ Right to Know” laws.

Right to Know laws ensure that patients can receive information about all of their legal end-of-life options. These options generally include refusing or directing the withdrawal of life prolonging care(such as a ventilator, feeding tube, cardiac device, medication etc), voluntary stopping of eating and drinking (known as VSED), palliative care, aggressive pain and symptom management, including palliative sedation, and where its legal, aid in dying.

Two states in the US have enacted Right To Know laws: New York and California. The California law requires physicians to provide counseling if the patient requests it. The New York law requires providers to offer terminally ill patients such counseling.

The right of patients to make their own informed end-of-life decisions, and to have those decisions honored, is a basic human right. Dying patients deserve to have the broadest range of choice and care, and the autonomy to decide what they want for themselves. Unfortunately, there’s still much to do to ensure that patients have the information they need to make informed choices.

A study published in the New England Journal of Medicine shows that despite an ethical and legal consensus that patients have the right to refuse life-prolonging treatment, dying patients in US hospitals often receive unwanted care. Terminally ill patients rely on their health care providers to share timely and informative information on their care. Unfortunately, there’s often a lack of communication between health care providers and their terminally-ill patients. For example, many patients benefit from being referred to hospice earlier rather than continuing curative treatment. But nearly two-thirds of dying Californians receive hospice services for less than one month, well below the national average.

Information and counseling regarding end-of-life care options is essential for terminally ill patients and their families. It can help the patient weigh all of their options and make an informed decision that best meets their needs and is consistent with their values and beliefs.

Dying patients deserve information about all of their options. Right to Know laws facilitate this empowerment.

November is National Hospice and Palliative Care Month: Celebrating Patient-Centered Care

As part of our mission, Compassion & Choices is committed to the promotion and development of patient-centered care. Education about the incredible value of hospice and palliative care for patients and families is a key part of informed consent: part of our Patient Centered Principles, which recognizes that people must have comprehensive, candid information in order to make valid decisions and give informed consent.

It’s been a milestone year for awareness around palliative care. From studies that show early palliative intervention helps cancer patients to live longer to Dr. Atul Gawande’s candid articles and interviews on the struggles talking with terminal patients about death, we are watching a blossoming of patient empowerment.

As part of National Hospice & Palliative Care Month, Compassion & Choices is also celebrating the passage of Right-To-Know Acts in California and New York.  These laws make it much easier for patients to obtain information on all of their legal end-of-life options.   These victories bring the total to 5 states (including Oregon, Washington and Montana) to embrace laws around end-of-life choice.

There’s still much to do. We know that interventions designed to improve doctor-patient communication still have a lot of room for improvement. And there are still many states that don’t have patient-centered health care laws on the books or as part of medical standard of care.

We’ll be highlighting much of the good stuff on hospice and palliative care this month at Twitter and Facebook. Join us!

Five States Give Patients Choice

“There’s nothing more we can do.” For too long, for too many, medical professionals have used these words when they believe they cannot cure their patients. Facing, as each of us must, the nearness of death, terminally ill patients too often speak of abandonment by their doctors. Trained to cure, most doctors remain untrained in caring for those they cannot cure. For decades, when patients sought support and information and found their caregivers uncomfortable with their quest, Compassion & Choices has stepped into the breach.

It is unacceptable to abandon dying patients to their agony. Compassion & Choices’ End-of-Life Consultation Service is, thousands of times each year, the non-judgmental friend who listens, gives counsel and information, and never abandons patients or their families. In my experience at the bedside, I learned that merely having a conversation with someone about anticipatory suffering, how that might be managed or might be escaped, often transforms their attitude toward life and their remaining time in the material world. Time and time again, we see spirits lifted. People reengage with life. The family calls us and says, “You won’t believe the change in Dad. He slept through the night. He ate breakfast. He told a joke. For whatever time is left, we have Dad back because Dad feels like a person again. He feels as though he has regained his ability to chart his own course.”

But as I have said our mission is not only to provide service to the few we can reach directly. We seek to transform the practice of medicine to insure a future where provider do not abandon their patients.

Now, thirty years after one of predecessor organizations was founded, we are beginning to see signs of that transformation. Today, five states have substantial legal protections for patients facing the end of life.


Two years ago, Governor Arnold Schwarzenegger signed the California Right-to-Know Act. We championed this law to address a major concern for terminally ill patients and their families, who often face the most important decision of their lives — how to live their final days — without understanding their legal rights and medical options. When a patient diagnosed with a terminal illness asks a physician, “What are my choices?” the Right to Know Act instructs the doctor to answer the question. Knowledge empowers patients and gives them comfort.

New York.

Last month, New York followed with “Right to Know” legislation, even stronger than the law in California, on which it was modelled. Unlike in California, the New York Palliative Care Information Act places responsibility to start the conversation on the doctor or other health care provider. This is a huge victory for patient-centered care, and will protect patients who are reluctant to pose difficult questions to their doctors. Beyond New York’s own large population, the medical schools and hospitals of New York are also the training ground for much of the nation’s doctors.

Washington and Oregon.

The citizens of these states passed initiatives that made physician aid in dying an accepted, legal part of end-of-life care. The question so many want to ask when they learn they are terminally ill is, “If it gets too hard for me to bear, is there something I can do to escape?” In both these states, terminally ill, mentally competent adults know they can ask their doctor for a prescription for medication they can, if they choose, ingest to achieve a peaceful death. Hospice workers in Oregon testify after twelve years’ experience with the Death with Dignity law, while few actually consume life-ending medication, the quality of conversations between physicians, patients and families has greatly improved. Under the law, Oregon has continued to be exemplary in its access to hospice.


On December 31st, 2009, the Montana Supreme Court ruled terminally ill Montanans have the right to choose aid in dying under state law. Compassion & Choices brought this case, continues to fight against lawmakers who would overturn it and is working to make sure every Montana doctor, nurse, social worker and citizen understands this newly-affirmed choice.

Five states, as diverse as they are far-flung, have taken steps to ensure their people will not feel abandoned and disempowered at the end of life. Five states where patients receive the power of information, choice and autonomy. Medicine is changing, as these laws give dying patients the ability to steer their own course. These five states provide a far better chance for “Dad to feel like a person again,” and for whatever time they have together, the family has Dad back.