Mrs W has been hospitalized three times in the last 6 months, with the most recent hospitalization occurring 2 weeks ago. At that time, she was discharged from the hospital to a cardiac rehabilitation unit, but because of her inability to tolerate physical therapy, she was discharged home with recommendations for hospice. Currently, a home health aide helps Mrs W with ADLs and acts as a constant companion while the daughter works. Mrs W’s previous medical provider indicated that she did not have any ADs and suggested that the patient develop a living will after further discussion with her daughter. No further EOL discussions or referrals for assistance with this matter ever occurred, nor was a living will ever completed.
The patient’s medical history includes hypertension (1997), diabetes mellitus type 2 (1999), and coronary artery disease with myocardial infarction/bypass (2013). CHF was diagnosed in 2014. Data obtained from the medical record reveal that she has “not gotten around to completing a living will but does not want machines keeping her alive.” She denies having a health care proxy but would elect her daughter over her son. There are no ADs in her EMRs. She concedes to avoiding the topic of EOL care but admits that confronting this issue probably would help her to get things in order.
After moving in with her daughter 2 weeks ago, she was transported to the ED when the daughter found her to be short of breath and having chest pain. This last CHF exacerbation began with a dry cough and then shortness of breath for approximately 2 days, with worsening swelling from feet to face and “all over chest pain.” She describes the pain as constant and nonradiating, and she rates it as 7 on a scale of 10. A non-ST segment elevation myocardial infarction (NSTEMI) is diagnosed, and the patient is admitted to the cardiac care unit with intravenous heparin, analgesics, aspirin, and clopidogrel.
Vitals are taken. The patient’s weight is 157 lb and her height is 5 ft 4 in. The heart rate is 78 beats/min, respiratory rate is 88/min, blood pressure is 184/93 mm Hg, and oxygen saturation is 93% on room air. The heart sounds are S1 and S2 with S3 gallop, with no murmurs or rubs. On auscultation, she has rales in the lung bases. She has bilateral pitting edema at 3+.
Her current medications consist of furosemide (60 mg twice a day), potassium chloride (20 mEq every morning), lisinopril (10 mg every morning), aspirin (81 mg daily), and metformin.
During her hospitalization 2 weeks ago, she had a full evaluation for heart failure, resulting in a New York Heart Association (NYHA) categorization of class III (marked limitation of physical activity) and a classification of stage C (structural heart disease and symptoms of heart failure) per the American College of Cardiology (ACC)/American Heart Association (AHA) staging system. Her treatment and discharge plan included oxygen and noninvasive positive-pressure ventilation, dietary sodium and fluid restriction, physical activity as tolerated, and attention to weight gain. Her medications were adjusted, lifestyle changes were addressed, and she was offered the option of home hospice care. Mrs W reported that she wanted “to talk with my new Florida doctor first. I don’t want hospice to be involved—that’s giving up. This all is in God’s hands anyways.”
When asked what an overall goal for care would be, she stated “I’d like to have my remaining days to be good ones and not have tubes keeping me alive. I want to live without pain and suffering, and when the time comes, to be at home with my children at my side.”
Comfort care at home needs to be the principal goal of care in this case. If the patient had established ADs with her past primary provider, she might have avoided unnecessary hospitalizations and the transfer to rehabilitative services. Her current health status in conjunction with her ADs would have served as a guideline for making healthcare decisions and coordinating best care. Pain and suffering might have been avoided.
Initiating the palliative care dialogue
Experienced palliative clinicians know that it is never too early to begin educating patients about the palliative approach and with time, to transition into EOL conversations. For providers, the idea of what palliative care is should be introduced early in the trajectory of a patient’s illness. When standard EOL discussions are incorporated into primary care early on, patients and families can develop ADs that provide a foundation for an open dialogue on EOL goals.
Mrs W was an excellent candidate for supportive care at home with a palliative component. She described her ordeal at the hospital, saying that the hospitalist suggested palliative care, but she was not ready for hospice. This patient needed a better understanding of palliative care as an approach, with hospice as an option.
Her new primary care provider explained that palliative care is patient- and family-centered and that it is a holistic approach to overall health care that addresses symptoms and quality of life. Furthermore, the provider described palliative care as an important and necessary component of standard health care and that curative and restorative treatment is available. In addition, hospice was described to Mrs W as quality care for those with less than 6 months to live, and it was explained that hospice services result in improved patient satisfaction during the last months of life and during the dying process. Mrs W was given a handout on palliative and hospice care, including web links and literature on available resources. The patient felt better after understanding that palliative care meant relief of pain and stress but also included standard treatment for her CHF and diabetes. Mrs W was also able to verbalize that hospice is a service for everyone who needs it during the later stages of life.
Voicing another common misunderstanding, Mrs W said that she thought this type of special help was reserved for patients with terminal cancer or dementia, and she was happy to learn of extended services for patients with chronic and complicated illnesses such as ESRD and CHF. The provider emphasized that palliation is meant to manage symptoms and pain and to improve the quality of life of all patients with illness or disease. The provider reiterated that neither palliative nor hospice care is required (and can be withdrawn at any time), but studies have clearly indicated that quality of life is improved by such an approach with services.
Because the new provider’s practice offered palliative services, Mrs W and her daughter were scheduled for an initial visit to establish how she viewed her own disease and what her goals were. This service was conducted by a provider and nurse team, with the practice social worker available as needed. Mrs W was frank, stating “I know I’m sick and getting weak. I am having more and more difficulty even walking a few steps. My big fear is that my symptoms, especially the shortness of breath, will be such a struggle.”