Miscommunication with family in advance care planning
Mrs Leung, an 80 year old lady, was admitted to the medical ward of an acute hospital, with orthopnea. She has a 10 year history of congestive heart failure and recent echocardiogram shows that the ejection fraction is 15%, on optimal medical therapy. She has increasing bradycardia, and rapidly deteriorating renal function. She lives with her husband, and have had advance care planning conversations with the medical team in charge, and after discussion with cardiologist for suitability of pacing, and renal physicians for dialysis, who considered that there will be no benefit for these procedures and the patient also preferred medical therapy alone, the management plan was to just continue medical therapy.
She was given iv. Dobutamine drip and oxygen. She was unable to lie down and had to be upright all the time, being very dyspneic. Her mouth became very dry and cracked, with some bleeding. The ward was full of extra beds and her bed was situated half way into the main passage way to the toilet and shower room.
In view of the undesirable surroundings and lack of personal comfort care, it was planned to transfer her to a non-acute hospital for palliative care. Just as this decision was made, her daughter appeared and threatened to complain to the Patient Relations Office, demanding pacing and dialysis and refusing to let her mother be transferred. She is a nurse and had seldom visited in the past. Because of this occurrence, the transfer was delayed pending explanations and interviews with the daughter. The patient died the next day, in great distress and with cracked and bleeding mouth.
Themes: acute vs palliative care, advance care planning, conflict between family and health care team, goal setting, life-sustaining treatment, heart failure end of life care
-Dr. Tak Kwan Kong, Honorary Consultant Geriatrician/ Clinical Associate Professor (Honorary)/ Clinical Lecturer (part-time), Department of Medicine & Therapeutics, Prince of Wales Hospital, The Chinese University of Hong Kong
The ethical dilemmas in this case are that while the acute medical team recommended palliative care in their advance care planning (ACP) for an advanced heart failure patient whose bradycardia and rapidly deteriorating renal function were considered not benefiting from pacemaker implantation and dialysis by the cardiologist and renal physician, the daughter of the patient demanded for such interventional procedures. There is disagreement between a family member and the acute medical team, and probably disagreement among family members about End of Life (EOL) decisions.
There are several points in the case that require further clarification:
While it was mentioned that the patient had advance care planning conversations with the acute medical team in-charge and expressed preference for medical therapy alone, it is unclear if her family (husband, daughter, and other children if any) was involved in the ACP. Are these just conversations without a structured process with clear documentation of details of the ACP discussion for continuity of care? What were the expressed value and preferences of the patient, and did her family members (husband, daughter, and other children if any) share similar views? The case was so presented that the daughter insisted on treatment procedures not wanted by the patient, but had the caring team evaluated how well can her daughter can convey the views and values of the patient on EOL decisions. Did the patient appoint any substitute decision maker (SDM) to represent her should she become mentally incompetent?
Advance care planning process to recognize autonomy:
For a patient who has a serious illness, planning on future medical and personal care at the EOL can be done via an advance care planning (ACP) process involving the patient, family and healthcare workers and takes into consideration factors such as disease prognosis, benefits and burdens of treatment, values and preferences of the patient. Decision-making regarding the patient’s future medical or personal care should be done by consensus building among members of the healthcare team and with the patient’s family, based on the best interests of the patient.
The decision-making process on EOL care in advanced heart failure is complex and is ideally a combined effort of palliative care and heart failure caring teams. The traditional model of ACP that focus on determining the medical interventions and life-sustaining treatments that are preferred at EOL has been challenged as ineffective as it is impossible to know the future context in which these decisions will be made. In the new value-based model of ACP in heart failure EOL care, the patient and their SDM acquire the information and develop the skills needed to participate in the complex medical decisions that may be needed as their medical condition worsens. It has been proposed that this approach is more likely to ensure that the care an individual receives is concordant with their values, goals and wishes, though its effectiveness has yet to be determined.
The dissatisfactions and complaints in this case may be prevented by a timely and structured ACP process involving the patient, her family and senior clinicians involved in the acute medical care (preferably with palliative care team as well), addressing their specific needs, including communication and support needs. The focus should be on good communication and establishing trust, listening and sharing of patient and family’s values, rather than whether such interventions are going to work or not.
1. Reveal disease prognosis: breaking the bad news to make patient and her family (including her daughter) aware that the patient is approaching her last days of life, and that palliative care is an integral part of heart failure EOL care.
2. Symptom management: a frank discussion with the patient and family on the potential benefits, harms and burdens of various treatment options and its impact on her symptoms and quality of life. Though the daughter insists on pacing and dialysis as the treatments of her mother’s slow heart rate and deteriorating kidney function, both conditions can arise from drugs used to treat heart failure, e.g. excess doses of digoxin, beta-blockers and diuretics. Her dry, cracked mouth may reflect excess diuretics pushing her to a dehydrated state. The caring team needs to review and optimize her anti-failure drug treatment regime to achieve the best symptomatic control.
3. Listen to values and preferences of the patient and to align expectations and goal of care among patient, family, and healthcare workers.
4. The care environment: It is a challenge to achieve personalised care, treatment and support for a frail old patient approaching EOL within a fast-paced busy acute hospital. But EOL care start in acute hospital.
Thus, acute medical team needs to be supported and closely linked with geriatric and palliative care teams. The transferal from acute hospital (where pacing and dialysis are available) to non-acute hospital (where palliative care is available) may be perceived as withholding of treatment or abandonment of care by her daughter. Thus, the question is best formulated not as the withholding of treatment but instead on the patient’s best interest.
Studies have shown that an integrated heart failure palliative care program can significantly improve quality of life for heart failure patients at EOL. Integrating the palliative care provider into the heart failure team has the advantage of reducing care fragmentation. This also decreases the emotional distress for the patient and family arising from the perception that their EOL care is no longer provided by a team they trust.