The questions around how we care for our elders are many, and they grow more urgent as the number of retirees and their need for care increase dramatically each year.
In his recent acclaimed book, Being Mortal, Atul Gawande, MD, takes a sober look at aging and death in our society and the harms we do in turning these into medical problems rather than accepting aging as a natural part of life. He explores the caring intent, improvements and failings of nursing homes and large assisted living facilities, to provide a life of worth, privacy, and freedom, along with sufficient services.
Dr. Gawande notes that the end of life is a time when loving support, autonomy, human dignity, and finding meaning in life become the most important goals. When serious illness or infirmity strikes, the essential question becomes, “How do we enable well-being, rather than try to ensure survival?” He concludes that the field of palliative care has emerged to bring this very question to the dying process, as well as to seriously ill patients who may not be facing imminent death. But he adds that while this trend is cause for encouragement, we will be able to celebrate only when all clinicians apply such thinking to every person they care for, and no separate palliative specialty is required. (1)
What is Palliative Care?
Palliative care is a medical specialty and a treatment approach that offers holistic care to people with a significant life-limiting illness or major health crisis, and to their families. This specialty arose as a response and alternative to the current western medical approach of fighting illness and infirmity with treatment at all costs. The word “palliate” means to ease or relieve, to make less severe or unpleasant without removing the cause. The goal of palliative care is to ease pain and suffering, and to provide the supports needed to help the patient live more fully and comfortably with their chronic illness. Palliative care can be provided while a person is also receiving active, curative treatments intended to prolong life. Palliative care affirms life and accepts death; it does not seek either to hasten or postpone death.
Life-limiting illnesses may arise at any stage of life, but are more likely to be diagnosed in later phases when regenerative life forces diminish and the aging process becomes evident. Palliative care may be used as part of treatment for those suffering from illness such as cancer, heart failure, end stage respiratory disease, kidney failure, stroke, AIDS, Alzheimer’s disease, Parkinson’s, multiple sclerosis, and similar conditions. Treatments and supportive measures help the affected person to manage pain and other physical symptoms, as well as stress, anxiety, or depression related to the emotional and spiritual impact of the illness. Palliative care may be part of a lifelong treatment, or it may be short-term in the case of terminal illness. In this instance, end-of-life care needs are anticipated and supported by the palliative providers, which is why palliative and hospice care are often grouped together. The transition to hospice care occurs when curative treatment is deemed no longer beneficial or is no longer desired by the patient.
Palliative care is provided by a team typically consisting of the patient and their loved ones, the primary doctor, a palliative care doctor, nurses, chaplains, social workers and psychologists, as well as physical therapists and dietitians as needed. As patients increasingly seek additional non-traditional treatment approaches, various complementary treatment providers and therapists are also part of the palliative team. In settings where anthroposophic care is provided, art, music, speech, color therapies, and eurythmy may be taken up by the patient, and these become an integral part of the treatment plan. Care is coordinated to treat the whole person and their family.
Palliative care is most often received in the person’s home, where supportive services are provided as needed, enabling them to continue to manage living in the environment where they teams on staff to initiate or continue palliative support in these settings. Many home-care services and outpatient clinics can also offer palliative care services.
The Role of the Nurse in Palliative Care
Nursing is the art of caring for those who are ill, assisting them to return to optimal health. Caregivers through the ages have been familiar with the fundamental goals, concepts, and practices of palliative care—to ease the discomforts and enhance the lives of those who are suffering with chronic or debilitating illness. Nurses have developed the art of tender heart-inspired caring on a professional level. They are, therefore, an integral part of the palliative care team, and they carry out many roles, depending on the care setting. Palliative nurses bring compassionate care to all that they do.
The nurse with anthroposophic nursing training can bring valuable insights and skills to enhance the effectiveness and expand the repertoire of care they can provide, depending on the setting in which they practice and their responsibilities there.
A life of worth and meaning. Palliative nurses embrace the philosophy of Dame Cicely Saunders, founder of the hospice movement (which gave rise to palliative care), who said, “You matter because you are you,” thereby recognizing and showing respect for the individual spirit in each person, and for each person’s unique journey and biography. (2)
We also know that the spirit continues after death, and as this is part of our orientation it allows us to meet the ill and the dying person with empathy, inner peace, and hope for the future. This approach is felt by the patient and often provides them with confidence and peace as they face the challenges of illness and death. As palliative nurses, we convey recognition that living and dying are part of a larger process that we are all part of, and in the later stages of life when outwardly we grow weaker and less vital, important inner development of the spirit is taking place. Nurses carry these concepts that help to give meaning to life; we strive to be experts in loving life, and this helps the person in our care to do the same.
Support of the whole person. Nurses are often the first members of the palliative team to meet with the patient and their family, to assess their needs and to determine, together with the palliative care physician, whether palliative services are appropriate. Nurses are well versed in concepts of health and illness, health care systems, treatments, and therapies. Thus, they are able to collaborate with the interdisciplinary team to create a holistic, individualized, patient-centered plan of care.
The interdisciplinary team meets over the course of the patient’s illness, sharing an inner attitude of reverence and respect for the individual and their unique life journey, and adjusting supportive services as the patient needs change. We support the person in meeting and overcoming the challenges of the illness, recognizing that they may be inwardly strengthened through this process.
Patient education. Patient education has always been and continues to be one of the central roles of the nurse. The palliative nurse checks in regularly with patient and family to help them understand diagnoses, proposed tests, meds, and treatment options, so that they may make informed decisions. If desired, the nurse teaches the patient and/or family members how to self-manage meds, remedies, and treatments, thereby enhancing their autonomy.
The nurse’s inner attitude or gesture lends both form and effect to the intervention provided. We carry the inner gesture of supporting uprightness as we provide the patient assistance in taking hold of their life in a new way, so they can better manage going forward.
Well-being, quality of life. The palliative nurse listens closely and without judgment to the patient and their family, to understand what really matters to them at this stage of life. Patients are coming to terms with their illness and how it will change their lives, and with their mortality. The nurse affirms and supports their individuality and choices, and advocates for them to live life fully with a view to achieving their goals. The warmth of true interest allows patients to feel that they are heard, recognized and that their life is valued. This is healing balm to the soul.
At the same time, the nurse understands and conveys the importance of rhythm and sleep in promoting health and well-being. Rhythm supports balance, strengthening, and healing. It is encouraged through daily meals, patterns of activity and rest, and healthy sleep patterns, while respecting individual lifestyle choices. The regenerative power of sleep is also supported with treatment as necessary. The nurse may offer a lavender foot bath in the evening to promote relaxation and sleep.
Easing Pain and Suffering. Palliative care nurses collaborate closely with the patient’s primary doctor and other palliative care practitioners to help the patient manage complex pain and other symptoms which may arise as the illness progresses. Conventional medications may be used, possibly together with curative and complementary meds and treatments.
In settings where anthroposophic medicine and therapies are offered, palliative care nurses work closely with the patient’s care team to offer a multitude of additional non-conventional holistic treatments and remedies to patients, which can be immensely effective in easing pain and suffering. Treatments are chosen together with the physician and implemented by the nurse, with the aim of supporting the patient’s innate ability to self-heal, restore balance and improve overall wellbeing.
Warmth is recognized to be an important treatment, both by itself and to enhance other treatments. Warmth promotes healing, pain relief, and body temperature support. The nurse is aware that as aging progresses, the elder patient often requires additional external warmth support. Warmth helps the individual to feel more present in the body, as it is a bridge between the spirit and the physical body. The nurse may offer a warm yarrow liver compress after a meal to support digestion.
Light also has a healing effect and may be used therapeutically, effectively helping to change doubt into inner certainty. The nurse also understands that hope is healing to the physical body. It provides a nurturing force, so we never take hope from a person and never say that nothing can be done.
Personal care/end-of-life care. “You matter to the end of your life.” Dame Saunders paved the way for appropriate care at the end of life with her hospice work. And this is the nurse’s special gift to the patients and their families, providing hands-on, compassionate care throughout the course of the illness, right to the end of life. It must be noted, however, that depending on the care setting, much of the direct patient care is often provided by trained caregivers, family members, friends, and partners, under the guidance and support of the nurse. The caregivers are really the heroes of palliative and hospice care, providing the touch that soothes and the presence that reassures. They help to ease suffering and provide human support right up to the threshold of death.
When participating in this role, the nurse carries an inner gesture of enveloping, by facilitating or directly providing care that is warming, comforting, and enfolding. If the patient becomes bedridden, the nurse may offer oil embrocation of the foot to promote a sense of inner uprightness, even at this later stage.
Palliative Care in Communities
Floris Reitsma, MD, calls our attention to the last phase of life, between age 70 until just before death, when the human soul is in the process of excarnating. That is when we become frail, weak, and in need of help. He notes that the struggles of this journey of aging yield important spiritual gains for the individual and for all humanity, and that the aging person should be supported in this challenging process within a community. He concludes, “It would make a great difference to the whole of civilized life if centers were available to prepare people in a proper and serious way to face the threshold, and to regard death as a spiritual birth.” (3) We are often most in need of palliative care in this last phase of life, as we navigate the challenges of aging and infirmity.
The philosophy of palliative care is included within the principles of anthroposophy, the work of Rudolf Steiner. Therefore anthroposophic nursing, medicine, and related therapies, as well as the other services arising from anthroposophy (including care provided in Camphill communities and the Christian Community), incorporate palliative care principles.
Elder care centers inspired by anthroposophy have been established in Europe, with nurses playing a significant role in their development. Camphill communities worldwide are beginning to develop elder care initiatives.
In the US, eldercare communities offering conventional care have sprung up to meet the needs of our rapidly growing aging population, many of them offering multiple levels of care from independent living to skilled nursing. However, there are relatively few organizations that incorporate holistic values and practices into elder care.
There are only two anthroposophically inspired communities dedicated to the care of elders in the US today. The Fellowship Community in Chestnut Ridge, NY, is the oldest, having been in operation for fifty years. Camphill Ghent, now in its eighth year, is the second (near Albany, NY).
We have heard the call to bring human dignity and spirit-oriented care to our elders. Both of these communities are developing anthroposophically based caregiver training courses, and are collaborating in this effort. Palliative care nurses and caregivers with anthroposophically inspired training will continue to be part of the effort to answer the call.
Renate Varriale, RN, is an Anthroposophic Nurse Specialist, and a member of the North American Anthroposophic Nurses Association (NAANA) and the American Holistic Nurses Association (AHNA). She works at Camphill Ghent in Chatham, NY. Visit anthroposophicnursing.org or email [email protected].
(1) Gawande, Atul. Being Mortal. New York, NY: Metropolitan Books, 2014.
(2) Saunders, Dame Cecily, quotation widely available on multiple websites:
“You matter because you are you, and you matter to the end of your life. We will do all we can not only to help you die peacefully, but also to live until you die.” –Dame Cicely Saunders, nurse, physician and writer, and founder of hospice movement (1918 – 2005).
- Reitsma, MD, Floris. 2018. “The excarnating human soul.” LILIPOH 93. Vol. 24.
“Anthroposophic nursing extends the art and science of nursing to an expanded view of the human being as a spiritual being within a physical body. We walk the path with the patient on their journey to healing.”
From the North American Anthroposophic Nurses Association (NAANA) website – Our Mission