Former U.S. First Lady Rosalynn Carter has recently transitioned to home hospice. She joined her husband, former President Jimmy Carter, who has been on home hospice since February 2023. This news regarding her transition to home hospice, shared during National Hospice and Palliative Care Month, reminds Americans the important role palliative care and hospice can play in our lives and the lives of our loved ones.
Rosalynn Carter, age 96, is not the first First Lady to share her medical diagnoses and treatment plans with the American public. For example, Nancy Reagan and Betty Ford both shared their experience with breast cancer, which led to a significant change to attitudes about cancer, helped the public to understand the importance of breast cancer screening and removed stigma surrounding mastectomy which influenced treatment decisions following breast cancer diagnosis.
Likewise, the Carter family announcement could lead to a drastic change and increased understanding regarding dementia, and more importantly increased awareness regarding the role of palliative and hospice care in people with chronic irreversible diseases like dementia.
“Most people can agree they would like to close their eyes at home surrounded by loved ones and never wake up, but in moments of stress difficult decisions are hard to make,” says my colleague Dr. Lisa Hirsch, assistant clinical professor of internal medicine at New York Medical College. She added “I try to prepare a patient and family for this. We try to get agreement in families so that when death occurs they can grieve without anger.”
Living With Dementia
In May 2023, the Carter family shared that Rosalynn Carter had been diagnosed with dementia and requested privacy.
People with dementia typically experience a gradual decline in one or more areas of cognition. This could include gradual worsening memory, learning, language, executive functioning, complex attention, visual-spatial and social interactions. As the disease progresses, they may lose capacity to make decisions, including decisions regarding medical and end-of-life care.
There are over 6 million Americans living with dementia and with the aging population, that number is expected to continue rising. Even with the best care, patients will continue to have decline in function, and so it is important to focus on symptomatic treatment. This is where palliative care can play an important role. Palliative care focuses on controlling symptoms that get in the way of the patient having the highest quality of life possible. In essence, palliative care helps patients to live as well as they can for as long as they can.
Transition To Palliative care
It is never too early for someone with dementia to start palliative care. Palliative care has a team-based approach, including having a physician, nurse, social worker and a chaplain to help guide the person’s care. The palliative care team can also be quite helpful in helping with medical decision-making. This could include understanding the individual’s goals and values and personalizing medical care. This makes it so that the person can be guided towards therapies that make sense based on their goals.
The palliative care team can also help with advanced care planning. Decisions regarding CPR and other life-sustaining and life-prolonging treatments are very important. For example, the team will want to know whether or not you would be interested in being on life support machines if you are no longer able to breathe on your own. Palliative care may also include completing advanced health care directives including identifying health surrogate and power of attorney to make decisions for you when you are no longer able.
Many people avoid palliative care because of the false believe that palliative care means you are giving up and the patient’s death is imminent. The opposite has been found to be true. In fact, studies have shown that for many diseases people live longer happier lives when they are placed on palliative care early. This is partly because palliative care focuses on symptom management, psychosocial management and chaplain support.
While receiving palliative care, there may come a point that the patient is no longer pursuing life-prolonging care, which could be for many different reasons. It could be because there are no more treatment options or because the patient or decision-maker is no longer interested in the available options. Once the prognosis is survival less than six months, the person becomes eligible for hospice care, which could be done in a facility or at home.
Transition To Home Hospice
Rosalynn Carter has opted for home hospice, which often provides more privacy and allows the patient to be in familiar surroundings. This is particularly helpful for a condition like dementia, where being in an unfamiliar environment could lead to increased anxiety, depression and confusion. Being at home can also help the patient preserve their sense of identity and autonomy and also allow them to be more engaged with their families which may decrease feelings of isolation.
There are other emotional symptoms that the palliative care team can be helpful in addressing such as worries about well being of loved ones, worries about death, financial matters, existential or spiritual distress and caregiver burden. The palliative care team’s early involvement provides more opportunity to build a trusting relationship with the patient so they can provide better guidance in the transition to hospice care since they will have a much better understanding of the patients goals of care.
“Hospice is a way to honor the way the patient wants to live the end of their life. One of the barriers to good end of life care is patient and family’s acceptance that they will die,” said Dr. Lisa Hirsch. “These are hard conversations that the medical staff can facilitate but they too must be comfortable with death. I remind them that death is not the enemy but suffering is.”
Selecting A Hospice Provider
When selecting a hospice provider, it is important to do your research and make sure the hospice will provide the type of care and support you need, especially if you have any particular religious or spiritual considerations. If you are on Medicare, you should go with a Medicare-certified provider. It is important to not make assumptions about the services that hospice will provide: Ask questions about what the caregiver’s responsibility will be once the patient is in home hospice and what level and frequency of support you will have from physicians, nurses, and other support staff.
Once in hospice, the focus is on comfort care and not so much on life-prolonging care. Hospice allows a person to live with dignity and transition to death with dignity. President Jimmy Carter and First Lady Rosalynn Carter have led admirable lives and have consistently shown Americans how we can live our best lives in the service of others. In sharing their latest transition to home hospice, they continue to show us how to live with dignity in every stage of life.
Update
The story was originally published on 11/19/23 at 09:31AM and updated on 11/19/23 at 4:02PM with news of Rosalynn Carter’s death. The Carter Center announced that former First Lady Rosalynn Carter died peacefully with family by her side on 11/19/23 at 2:10PM at her home in Plains, Georgia.
Read the full article here