My interest in this topic began as the Hospice Movement was developing in the 1970s and early 80s. In my final year in college, I took a course called “On Death and Dying” in which we used Elizabeth Kubler-Ross’s book as our text. As I began my career providing direct patient care to hospitalized individuals, I witnessed the passing of so many people. Some of those experiences were heart-wrenching as the individual and family suffered greatly.
In contrast, some deaths were beautiful. I will never forget the day, during a pediatric rotation as a student, that I observed a nurse whose responsibility for her entire shift was to hold and comfort a dying baby. The other nurses eagerly took on additional patients, allowing the nurse to focus exclusively on this child.
As a young nurse myself, I sought to influence the care provided prior to a person’s death, to ensure it was humane, holistic, inclusive of family members (when possible), and offered in a way that promoted comfort and minimized suffering. Like Elizabeth Kubler-Ross, I too wanted individuals to die with dignity.
In 1963, Dame Cicely Saunders introduced the idea of specialized care for the dying to the United States in a lecture at Yale University. In 1974, Florence Wald, along with two pediatricians and a chaplain, founded Connecticut Hospice in Branford Connecticut.
Over the following years, hospice care became a benefit supported by both Medicare and commercial insurances. Today, it has evolved to include a bundle of services. To be eligible, your physician as well as the hospice doctor must certify you have a life expectancy of 6–12 months. If you choose this level of care, you forgo any curative treatment.
Although hospice care has become more normalized, it is often not understood and therefore underutilized. Most people I encounter either believe it is a place you go to die or that it involves nurses coming to your home to care for you 24/7 until you die. Neither of these is accurate.
Rather, hospice care was designed to wrap around care a family might provide to a loved one at home. In fact, 98% of hospice care is delivered this way. It includes:
- Care from nurses who visit your home, but generally no more than 1-2 hours per week
- Physician services most often provided through consultations with the nurses (you don’t usually meet a hospice physician when receiving this care)
- Durable medical equipment such as a hospital bed, wheelchair, or lift device to promote your comfort and to assist others with the challenging work of physically caring for you
- Drugs for the purpose of managing pain and anxiety symptoms
- Some nursing assistant or homemaker services, but generally no more than five hours per week, usually for assistance with bathing
- Social services
- Spiritual and grief counseling for both the individual and the family
This care poses challenges for families, so a great deal of organization and creativity must be employed. This may include shifts by individual family members and friends, possibly enhanced by some privately-paid nursing assistant services.
In-patient hospice care does exist, but fully paid insurance coverage is only for those who meet very specific clinical criteria, such as pain that is not controllable at home. Some individuals may go to a hospice house to spend their final days, and although the skilled services may be paid for, room and board are not and can cost upwards of $5000 per month.
Palliative care is defined as, “an approach that improves the quality of life of patients and their families facing the problem associated with serious or life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.”
Palliative Care can be a precursor to hospice care and may be provided by the same team of hospice nurses and physicians. Unlike hospice care, palliative care is based on patient needs, not prognosis, so these services can be an added layer of support and provided alongside curative treatment.
Palliative care professionals encourage individuals to become active participants in their own care. They assist with shared decision making that takes into account the patient’s goals and preferences before embarking on new treatment protocols and pain management techniques.
Examples of our clients who have used palliative care services include:
- A woman undergoing chemotherapy for a cancer diagnosis made six years previously and for which she received numerous rounds of chemotherapy, radiation therapy, and surgery
- A man with progressive heart failure for whom aggressive medication management was the only option
- A man with a progressive neurologic condition for which no treatment is available
- An older client with chronic pain from severe arthritis for whom surgery was not an option due to numerous underlying medical conditions
Medical Aid in Dying
Medical Aid in Dying is an end-of-life choice that involves the prescription of lethal medications to a consenting patient who can self-ingest them. Legislation has been passed making medical aid in dying legal in 11 states, with legislation under consideration in many more.
A recent study found seven reasons individuals make this choice:
- To reduce suffering
- Because of an inability to enjoy daily activities
- Inadequate pain control
- So as not to be a burden to others
- Because of the loss of dignity
- Because of the loss of autonomy
- For financial concerns
This movement remains controversial and is often misunderstood. What most people do not know is that individuals must go through a rigorous approval process with two independent physicians determining the person has six months or less to live, that they are making an informed decision, and that they are mentally competent to make that decision.
Several of my colleagues in the field of private healthcare advocacy work in this space as it is difficult to accomplish this choice, especially if a care partner and/or support system is not available.
Just this past weekend, I was coaching a young woman interested in becoming a nurse. She asked me which aspects of nursing I liked best. I answered that it was the personal and intimate relationships developed through excellent communication, assessment, and problem-solving skills that made a difference to the care of individuals and families.
I then found myself describing how this happens along a continuum of care and that it can be most gratifying as people approach end of life; it’s a time when excellent nurses are especially important. I hope she makes the choice to go down this path!