The isolated home hospice patient without a support system is challenging to the team in three ways:
- achieving optimal care and comfort at home
- creatively developing a plan for the final stages of dying
- maintaining appropriate emotional boundaries.
There may not be a health care proxy to name, an attorney in place, or a single contact person to assume any responsibility for the patient. If the patient is in the earlier stages of the terminal condition, there may be an opportunity to organize a contingency plan in the event that the patient’s physical needs outweigh the goal to die at home.
Should physical or cognitive deterioration accelerate rapidly before services are in place, the team can utilize the hospice benefit of a respite placement at a hospice house. If symptom management is a concern, then a transfer to general in-patient level of care may be warranted. This article will focus on the patient with weeks to months to live, completely alone, with minimal financial means. This is the perfect scenario to stimulate the hospice team’s penchant to rescue, ability to set limits, observe for over-involvement, and work as a team to monitor group behavior. The following steps will guide the team in evaluating a course of action and begin negotiations with the patient.
Factors to consider upon admission are competency, the availability of daily living needs, and the capacity for self-care and safety. Interdisciplinary team members can assess the patient’s history within their own specialty including nursing, social work, and chaplaincy
“Hospice is comprised of many pieces of the same puzzle, with several members of the team working together to ensure the patient’s and the family’s needs are met during this stressful time.”Pathways
The goal of the assessment phase is to determine if the patient is truly alone, or might have a distant relative, a friendly neighbor, or former church involvement that may unearth potential support persons. An assessment of help-seeking behavior will provide information about current services, the patient’s willingness to accept help, or when and why help-seeking stopped. Invite discussions of current or former professionals the patient has known, such as a specialist, therapist, or staff at a Senior Day Center. Each piece of data gathered may lead to more exploration and prompt further sharing. Caring for the dying at home is a complicated endeavor and therefore, referrals to local organizations may be necessary.
While interviewing the patient, questions of competency must be prioritized. Should competency be of issue, an evaluation must be expedited to rule out the need for legal intervention.
“Competence is a legal term that can be defined as being “duly qualified: having sufficient capacity, ability or authority” — in practice it requires health professionals to perform a functional test of competence to examine the ability of the particular patient to consent to the specific treatment being offered.”Nickson
The competent patient who can understand and rationally participate in end of life planning will lead the effort to die at home. The hospice team, understanding that the patient may not reach this objective, can continue to form working relationships, continually assess safety and needs, and support this goal for as long as possible.
Post initial assessment, the hospice social worker and patient can discuss concrete needs that require immediate attention. These may include hiring an attorney for legal matters, help with yard work, food shopping, or paying bills. If there are pets involved, options for final arrangements can be reviewed. If the patient has not pre-planned disposition of the body, the time is right to raise this concern. Should the patient refuse legal help, decisions about possessions, property, and finances should be considered. While the hospice team will not be responsible for these matters after death, helping the patient reflect on possibilities will be an important emotional intervention.
In the gentlest manner possible, the team should inform the patient of the anticipated process of dying and the foreseen barriers to remaining at home. The patient will need time to ingest and acclimate to the details. Hopefully, with continued discussion as symptoms develop, the patient will agree to die in a supportive living environment. Code status decisions can be reviewed and changes made, comfort medications explained, and initial safety measures enacted.
Once an initial plan has been agreed upon and the patient is ready to receive help, the social worker can begin making referrals which will promote physical and emotional health. Involving community partners to assume responsibility of issues remaining after death may be required. Food delivery programs, medical alert devices, laundry services, and assistance with medication management are potential items. The hospice nurse will order durable medical equipment to ease the transition as the patient declines. A referral to the hospice’s volunteer department, complementary therapies, or a senior home visitor program may be acceptable to the patient.
As the patient visits continue and the hospice team gains trust, a flow of negotiations will be necessary especially when functional abilities decline. The intended outcome is for the patient to eventually understand and accept when and why remaining at home may be deemed dangerous and to implement the transition plan previously agreed upon. If the patient is not able or willing to engage in this transition plan, the hospice staff will need to collaborate with their leadership team and community services to create a plan and determine the next steps to maintain the patient’s safety.
Working with an isolated patient, alone by choice or as a result of life circumstances, can draw in a team and result in the crossing of boundaries. Good-natured, compassionate believers in self-determination and strength-based work may assume an overburden of responsibility; these hospice team members may try to replace the family which the patient is lacking. The best intentions can become an overwhelming situation—especially in contexts where the hospice and the community are not working in tandem to assist the patient. GoodTherapy explained, “Healthy boundaries serve the important function of allowing people to take responsibility for themselves and their actions while helping them avoid being in a position where they unfairly or inappropriately take responsibility for the emotions and needs of others.” Professional boundaries serve the purpose of protecting the agency or organization, the patient, and the individual team member. The following safeguards can be employed by team members to maintain healthy boundaries with the patient.
- Fluency in the hospice organization’s policies on professional boundaries.
- Fluency in the boundary expectations of the individual licensing entity.
- Knowledge of team member’s work ethics and practices.
- Commitment to consistent supervision.
- Continual self-awareness and self-monitoring practices.
Open and honest communication among hospice team members is crucial. Forming a shared goal of mutual maintenance of boundaries will provide a sense of emotional safety. Also, conducting joint visits can mitigate the impulse to over-step or over-promise. The isolated hospice patient is a daunting assignment for the hospice team. Comprehensive assessment, careful planning, and timely community collaboration will increase the potential of the patient to achieve his or her goals.
Pathways HomeHealth and Hospice. (2019). Hospice: Exploring key concepts of the interdisciplinary team. Pathways HomeHealth and Hospice. Retrieved from https://www.pathwayshealth.org/hospice-topics/hospice-exploring-key-concepts-interdisciplinary-team/
Nickson, Chris. (2019, February 4). Capacity and competence. Life in the Fast Lane. Retrieved from https://litfl.com/capacity-and-competence/
GoodTherapy. (2017, June 27). Boundaries. GoodTherapy. Retrieved from https://www.goodtherapy.org/blog/psychpedia/boundaries