End-of-Life Care – Where?
By Lisa M. Petsche
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If you are caring at home for a parent or other relative in an advanced stage of a life-limiting illness - such as cancer or lung disease - you may reach a point where you wonder if his or her needs might be better met in a hospice facility or a hospital palliative care program.
Before you consider this route, be sure you have explored what's available in terms of community support services. These might include: in-home programs that provide medical care, personal care or various kinds of therapeutic services, such as physical therapy and social work; adult day care programs; recreation programs; friendly visiting services; support groups; respite programs; and home adaptation subsidies or grants.
To find out what types of end-of-life supports are available in your area, contact the social work department of your local hospital or the Hospice Network of Maryland (call 410-729-4571 or go online to www.hnmd.org).
Even if relevant community resources are in place, however, a time may come when they are no longer enough. Following are common reasons for admission to an inpatient palliative care program.
Care Recipient Issues:
- Need for assistance with activities of daily living, which include bathing, dressing, grooming, toileting and feeding.
- Incontinence of bladder and/or bowel.
- Need for assistance with transferring from one surface to another - for example, moving from bed to chair or wheelchair – or immobility.
- Pre-existing health conditions that also require intervention – diabetes or dementia, for example.
- Distressing symptoms - such as pain, nausea or vomiting, shortness of breath, restlessness, confusion, nutritional problems and skin issues - that are not well controlled.
- Safety concerns: forgetting or refusing to use recommended safety equipment such as a walker; frequent falls; accidents with appliances or cigarettes.
- Refusal of care or medications, verbal or physical aggression, wandering or other challenging behaviors.
- Special treatment and equipment needs, such as a pain pump, specialty wound care, tracheostomy care, an intravenous central line or total parenteral nutrition (administration of nutrients through intravenous infusion).
- Complex needs, fluctuating health status or rapid decline, necessitating skilled assessment, intervention and monitoring from a variety of health care professionals. (A typical interdisciplinary care team consists of a palliative care physician, nurses, health care aides, pharmacist, physical therapist, occupational therapist, dietitian, speech-language pathologist, social worker, recreation therapist and chaplain.)
- Repeated emergency room visits.
- Desire for life-prolonging interventions, necessitating a more acute level of care.
- Desire to spare or relieve loved ones from the physical and psychological demands of caregiving.
- Anxiety, fear or other distressing emotions affecting quality of life.
- Inability to meet co-existing obligations, such as to other family members or an employer. (If you’re employed, investigate whether you qualify for a leave of absence under the Family and Medical Leave Act of 1993.)
- Physical health concerns: chronic exhaustion; stress-related conditions such as ulcers, insomnia or frequent infections; chronic health conditions—such as arthritis or osteoporosis--that limit the ability to provide hands-on care; injury sustained during care; acute illness requiring hospitalization; need for surgery followed by a period of convalescence. (In the latter two cases, inpatient care might be a temporary measure.)
- Mental health concerns, such as ongoing anxiety, fear or depression. Social isolation can contribute to feelings of aloneness (“No one understands what I’m going through”) and hopelessness (“There’s nothing to look forward to” or “I feel trapped and there’s no way out”).
- A major life crisis such as marital separation, illness of another loved one or an unexpected death in the family.
- Physical accessibility issues.
- Cost of supplementary in-home help, medical supplies and equipment or home renovations is prohibitive.
- Limited instrumental and emotional support from relatives and friends.
- Family conflict regarding caregiving or other issues.
In some situations admission to inpatient care may be short-term - ranging from a few days to a few weeks - the goal being to stabilize symptoms or provide caregiver relief.
Patients who don't return home may be able to go for visits on day or overnight passes as their condition and available resources permit. In addition, palliative care settings normally have an open visiting policy so that patients and their loved ones can spend as much time together as possible.
Lisa M. Petsche is a medical social worker and a freelance writer specializing in health and elder care issues.