In 1980 when I was providing home health services, my average patient was 50 to 65 years old. After discharge, when I ran across them in the community, they would say, “Thank you for helping me get back to work” (or back to golf, or to their grandkids). Now, 25 years later, my average client is 75 to 90 years old, essentially the same patient with more health issues, and the feedback I receive usually includes a comment like, “Thank you for helping me prioritize what’s important to me.” Or a family member will say, “You taught me how to enjoy my mother while she was still here!” Or “When I went to see my parents, I knew what to say to them; we had a productive visit.” These are heartwarming comments; but more important, they tell me that I have met my professional goals to empower my patients to engage in the occupation, or art, of aging well, which includes planning ahead for changes — all the way to the end of life itself.
Clinical Scenarios
Scenario One: Mrs. Y. has had a severe CVA. Her husband has been at her side in rehab at the skilled nursing facility for 3 weeks. He says he thought they were doing well, although there was little progress. Suddenly the staff at the SNF said she would be discharged for lack of progress. He is angry and confused. Once at home the home health OT sees little potential for progress, but the husband’s anger and desire to do what he can for his wife leads to the following objectives for the husband to demonstrate:
- getting her to a sitting position and engaging her with familiar, well-loved music
- getting her on a toileting schedule with the bedside commode
- having a plan for likely scenarios like aspiration, falls, skin breakdown or a caregiver limitation such as flu or back pain
Before the final objective, above, can be attained, Mrs. Y. develops pneumonia, and her husband becomes distraught when he sees her discomfort. He states he doesn’t want her to go back to the hospital but feels powerless to make her comfortable and safe. He doesn’t know his options. He says he just wants her to be at ease. He has never heard of palliative care and thinks hospice means he has given up on his wife.
Scenario 2: Mr. L. is still working at age 64. While on a vacation, he breaks his leg during a spirited dance move and while recovering from that injury, he finds that his genetic kidney disorder is much worse than he thought. As a result, he will need to go on dialysis. He doesn’t progress as fast as expected and cognitive issues are identified as interfering with recovery.
The OT goals initially focus on ADLs (while non-weightbearing) but then the therapist recognizes his increasing discouragement. Initially, Mr. L. says the slow progress has him dispirited. The OT asks a simple but difficult question: “What seems most troubling for you: the slow progress of the disease or thinking about what the future holds?” A long silence ensued, followed by a discussion in that session and in future sessions about Mr. L’s concerns about his condition and his plans and wishes regarding his care. His wife added her concern about his increasing disabilities and being left alone.
Neither Mr. nor Mrs. L. recognized that worry about one area was hindering progress in other areas. OTs educated them about 1) Possible options for the disease’s progression and impact on cognitive, physical, and emotional functional areas, and gave them resources for researching this information themselves; 2) Possible steps to take related to work, home adaptation, and communication; and 3) Role-playing to develop skill in expressing their concerns and worries with the physician and with each other as a helpful strategy. While setting goals for self-care, the OT addressed skills to overcome obstacles in all aspects of occupation, such as dressing, meal prep, and functional communication.
Scenario 3: Mrs. P. is the grandmother and primary caregiver of a boy disabled by severe seizures. He receives services funded through state programs. Mrs. P. is a smoker, has little outlet for exercise, and is overweight.
Her only goals are associated with the care of her grandson. The OT’s goal is adapting the environment to be safe and engaging for the grandson. The OT continually reinforces that the best thing she can do for her grandson is to take care of herself. They discuss healthy lifestyle changes for her as well as her fears in the event she becomes unable to manage.
The therapist focuses on adapting the environment for her as well as for the grandson. She also asks her to describe what supports she would want to have in place if she could not be the caregiver. With these conversations and the resulting therapeutic plan for action, the OT was able to provide useful information to Mrs. P., encourage her to use the resources available, and support her in building a strong path to independence.
The domain of OT supports health and participation in life through engagement in occupation.1 It includes helping people be independent with the occupations necessary to manage healthcare decisions and to have the necessary skills to advocate for the medical care they do or don’t want, especially at the end of life. However, few people of any age have thought through their end-of-life options or shared their thoughts with the people in their lives who would need to know their wishes, if they became unable to speak for themselves.
Occupational therapy is typically thought of when restoration of function to improve quality of life is prescribed, but in hospice care, we ensure quality of life by engaging clients in meaningful occupations during their remaining days.1
OTs typically provide restoration of function; but in hospice care, the focus is on engaging clients in meaningful occupations during their remaining days to ensure quality and sanctity of life.2 OTs who work in the hospice setting report hospice to be family- and client-centered and intimately aligned with our professional values.3
Yet healthcare professionals unfamiliar with this setting have a hard time assisting patients in this area because they themselves lack the essential knowledge and skills their patients need. This module may help you as an OT to think about the skills you already have and may give you additional tools to start difficult end-of-life conversations with patients.
OTs already talk about participation, health promotion, and engagement in occupation, so it is a natural progression for them to talk about the long-term and ultimate impact of a patient’s condition. The subject is probably already on patients’ minds. And they are often quite specific about their concerns.
They have been ruminating, but sometimes without the knowledge or skills necessary to communicate their ideas to others so their wishes might be heard and understood by those who are involved in their care. Family Caregiver Alliance’s study4 found lack of knowledge was the number one reason given for not accessing services and to give them the skills to ask the questions themselves.
Common Concerns of Aging, Death, and Dying
Several issues and misconceptions permeate aging and the end of life. First, people tend to keep their distress about aging to themselves, not realizing the universality of the concern. Most people feel apprehension over limited resources of money, support, and control.
All of us will face issues of death and decline at some point in our own lives and with the ones we love. Our aim as OTs is to identify when concerns about these predicaments are interfering with wellness and to identify what we as OTs can teach to help empower the patient.3,5
Second, according to a survey conducted by the National Hospice Foundation, 75% of Americans did not know that hospice care is available in the home, and 90% did not realize that hospice care can be fully covered by Medicare. This happens not because they can’t be where they choose at the end of life, but because they have not taken the steps to plan for that event.
However, this study also showed that Americans want the kind of end-of-life services offered by hospice.6 If they were to face a situation in which they might be unable to make decisions for themselves, 58.9% had done nothing to prepare, 18% had a living will, and 7.5% had initiated a healthcare power of attorney.
Overall, 47.6% said they needed more information in order to reach the best decision about end-of-life care. According to multiple surveys, more than 80% of Americans have expressed a desire to die at home.7 Nonetheless, more than 80% die in healthcare facilities. It is within the OT domain to give patients the skills to ask for the information they need.
Third, the general public’s idea of “successful” CPR is sometimes different from reality. In elders and people with multiple medical problems or those who have a terminal disease, “successful” outcomes of CPR can include long critical care hospitalizations, a 50% chance of sustaining major brain damage, near-universal chance of rib fractures, and extended debility.8 In the long-term care population, 97% of the patients die after an extended hospitalization. Of patients older than 60, 90% never leave the hospital after receiving CPR, if they live through the procedure.9
Researchers have found that 100% of elderly patients discharged after receiving CPR were clinically depressed for several months after discharge.8 Does your patient know he or she has a choice about CPR? It is thought that if these statistics were better known, some people would choose not to have CPR.9 Obviously, CPR does not always result in grim outcomes, but helping clients be aware of their options and possible outcomes is good client-centered practice.
Fourth, misunderstanding basic concepts about hospice care can hinder patients’ abilities to make choices. For example —
- Life-sustaining treatment is intended to maintain the sanctity of life at all costs; it can also prolong the process of dying for a person with poor prognosis for recovery. Preserving life may not provide a medical benefit to the client and may in some cases violate the patient’s wishes.
- Physician-assisted suicide provides the patient with the means for causing death and relieving suffering, while in euthanasia, the physician actively causes the patient’s death. The majority of U.S. states have laws that prohibit assisted suicide. See www.nightingalealliance.org/pdf/state_grid.pdf.
Occupational therapists can clarify choices by providing clear explanations of the concepts and notions surrounding the end of life.
Finally, a misunderstanding of hospice often delays referral until the last weeks of life — too late to fully benefit from everything that hospice offers. Hospice is not a place; it’s a concept of care.3 Hospice services can be provided anywhere from home to hospital; the care follows the patient. Hospice does not mean that the person will soon die, nor is it giving up. The idea is to forgo futile care and focus on comfort or palliative care. Patients can still have treatment for a broken bone or oxygen for comfort. In fact, some people improve and are discharged from hospice.
Medicare Part A and some insurances pay for hospice without extra cost. In fact, about 85% of the services used by hospice patients is paid for by Medicare.6 Generally, one must be certified as having six months to live and to have chosen to forgo curative care to qualify, but these definitions are a gray area. Encourage your patients to call several hospices and ask about their specific criteria.
Ways to make a discussion of hospice more comfortable are to start early, before it is needed, to talk in generalities, and to articulate what hospice offers. Hospice provides nurses, social workers, home health aides, medical equipment, and specific therapies. Hospice also provides medication, volunteers, respite, and chaplains. Hospice focuses on comfort, dignity, and emotional support to the patient and the family, even after the patient dies, which is another reason to use hospice.
Enhanced Active Listening
Fewer patients and families would feel their needs were disregarded if more therapists initiated end-of-life conversations and acted on opportunities to assure patients understand both their medical conditions and their healthcare options. Helping patients express and document goals of care that follow their personal values, and empowering them to speak up for what they want in healthcare is an occupation performance skill.
While these can be difficult conversations to initiate, they are easier when they’re started early; for example, while patients are in rehab, while they are observing and commenting on the other patients they see. An opportunity may arise when their situation changes, perhaps a new diagnosis, a change in their support system, or a change in their level of dependence.
While initiating this conversation can be done too late, it can’t be done too early. If you feel unprepared or caught off guard, the next time you are with the patient, say, “You know, I’ve been thinking about what you said last time, and I’d like to answer your questions today if you feel up to it.”
Patients may express questions of spirituality, faith, and religion: “Why me?” and “What is the meaning of this?” Other patients express grief, anger, depression, and hopelessness. Still others have the primary concern of limited resources of money, time, and support. Listen for these themes.
Even though these problem areas may not seem to be in the OT domain, helping patients understand the relationship between their occupations and their health, their choices about engaging in satisfying occupations, the opportunity to grow through what they do, and to experience the feeling of independence, interdependence, security, health, and well-being all fall from the profession’s core beliefs.1
Your answers to their concerns and the way you answer can instill hope, explore what that hope might be, and explain what10 they can do to attain it. Your answers can mix spirit, function, and life all together and lead right into a discussion of patients’ goals for care, directly related to their goals for participation.
Discussing Options and Making Plans with Patients
If patients and families are going to have their needs met, they need knowledge of the healthcare system and clarification of their values.
Knowledge of the healthcare system: If your patients live at home or in a residential care, assisted living, or skilled nursing facility, work to support them to have an opinion about what they want if 911 is called and to identify who will speak for them if they cannot speak for themselves. Clarify that they understand their state’s requirements regarding CPR and out-of-hospital do-not-resuscitate orders and know how to attain the proper forms to feel more in control and get the care they desire.
The Physicians Orders for Life-Sustaining Treatment paradigm is a new tool used in some states to improve communication within and between facilities. Look online for the status of the POLST in your state.
In 2002, a group of Yale researchers explored the issue of quality in end-of-life care.11 Their findings indicated that patients’ preferences are not well understood because the treatments offered are too limited. The study included 226 persons, ages 60 or older, who had limited life expectancy associated with cancer, congestive heart failure, or chronic obstructive pulmonary disease.
Researchers discussed possible treatments and what they involved. When offered a treatment with no more than a week in the hospital and a few minor tests to return them to good health, 98.7% chose to accept the treatment. When offered the more extensive treatment of a month-long hospital stay with extensive tests that might or might not return them to good health, only 11.2% chose to accept treatment, with the rest choosing to die instead.
Patients were told whether the outcome was a certainty, if it would return them to good health, or if they would most likely die soon anyway. As the likelihood of an adverse outcome increased, fewer patients were willing to accept treatment. If it meant living with a physical impairment — that they would be bed-bound and unable to get to the bathroom or carry out daily activities alone — 74% decided against the treatment.
The investigation has important implications about a patient’s need for information before making a decision. Study results indicate that when given the probable outcomes of treatments, including possible impairment, a patient’s acceptance of the treatment often changes. Being able to state functional goals of care is directly related to occupational therapy, and OTs can teach patients to clarify their wishes with their primary providers.
The American Hospital Association 2007 Annual Survey of Hospitals shows that 1,240 hospitals now provide palliative care programs so they can create a smooth transition from aggressive treatment to comfort care.12 Your patients can continue to advocate for that change. After all, this elderly generation demanded improved birthing centers for their children after WWII, developed day care centers, and broke the glass ceiling. They can bring about better end-of-life care, too!
This study also showed that Americans want the kind of end-of-life services offered by hospice. The OT’s objective is to learn what information deficit patients have regarding hospice care and what they need to know to manage their own care as their condition changes.
Values: The process of aging has changed but the optimum goal is the right to self-determination. Some people want control; others want to leave it to medicine or a higher power. The decision will be different for each person and different at different times in his or her life. Reassure your patients that they can and will change their goals as their conditions change, so they need to keep their loved ones and physicians informed.
Artificial hydration and feeding tubes are a concept that has become overly simplified. The reason patients want or don’t want a feeding tube is more important than whether they want one. The goals of care can clarify the purpose of the feeding tube, how long they would be willing to have it, and their chance of getting off it. They might want a feeding tube so they could live long enough to see their daughter fly in from another state, for example
As OTs, we need to be able to provide accurate information to our patients. For instance, some people will be relieved by the idea that a natural decrease in appetite can be part of the dying process. Not eating, for the person who is slowing down, is not starvation. Appetite enhancers can reverse a natural process.
Swallowing problems and aspiration pneumonia are also a natural part of dying. Putting in a feeding tube does not stop the person from choking on his or her own saliva. Decreased hydration does not necessarily require IVs for fluids. Decreased hydration is part of the slowing of the body, becoming less conscious, and feeling less pain.
Information for lay people about these concepts and other difficult topics, found in excerpts from the Handbook for Mortals,13 can allow your patients to make choices consistent with their values. The OT’s job is to check to see if patients and families are informed, are clear about their knowledge and values, and are empowered to speak up and take action if needed.
Answers to the following questions will help open a discussion about values and tell you where misconceptions are present and where empowerment is needed.10 Try leaving an 18-second pause before continuing with another question.
- What do you know about this disease (or condition)?
- What did your doctor tell you? What have your family, friends, or religious leaders told you?
- How do you picture yourself in 10 years, five years, or one month?
- What are the long-term ramifications of your condition?
- How do your religious beliefs help you?
When end-of-life planning is brought up, patients may make comments, such as “I already filled out that form, my attorney has it, and it says no tubes.” Consider this a teaching moment. You will want to assess your patient’s readiness to learn; ask his or her permission to address issues that may seem intimate and personal. Always remember to ask your client to demonstrate understanding after teaching – stress, age, and disease processes impair cognitive processing.
An advance directive left solely to an attorney or when unclear about specific goals of care is not useful.14 It is important to know if the surrogate decision maker has a copy and understands the goals of care. The best information to put in an advance directive states one’s minimum expectations of quality of life in such terms as, “I must be able to have a sense of humor,” or “I must be able to talk,” or “I must not be a burden on my family” (defining burden!).
The functional nature of these comments makes them relevant to OT. The patient is likely to express an opinion during the conversation, and the OT can ask clients if they have put those thoughts in an advance directive or expressed them to their family while helping to clarify the intent. Here are some phrases that need to be specifically addressed:
- “No tubes” does not define what the tubes are for or how long they might be used.
- “No heroic treatment” does not define what heroic means.
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“No extraordinary measures” can become outdated because what is extraordinary today may not be tomorrow.
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“Not a vegetable” is difficult to define, and it needs clarification about the potential for coming out of a vegetative state. Also, if such a state is resolved, what degree of disability would the patient find acceptable? And, very importantly, does the person whom they designate to make this decision agree with them?
How do you document your conversations? Describe the conversation as a functional activity. Show change in your patient’s knowledge or skill. An example might be —
Problem: Knowledge deficit, re: disease process and long-term effects on ADL
Goal: Patient verbalizes two ways that he may need to adapt as his condition changes.
Goal: Patient and caregiver able to verbalize their different priorities, re: maintaining ADLs as the disease progresses.
Improving quality of life and restoring function are core values for OT practice. When we engage our clients in meaningful occupations, including creating a plan, in advance, for independence at the end of their lives, we create the opportunity for positive adaptation throughout the lifespan. Understanding hospice care is a skill you and your patients need.
Resources on End of Life Issues
Coda Alliance: www.codaalliance.org 408-267-3922
Source for Go Wish Cards, an inexpensive and efficient way to help patients identify and discuss goals of care. The cards have documented, published evidence of effectiveness in discussing concepts with people with dementia.
My Mother, Your Mother by Dennis McCullough, MD.
Embracing “Slow Medicine,” the compassionate approach to caring for your aging loved ones, source of the “Eight Stations of Late Life” and practical information for each station.
http://www.finalchoices.calhealth.org/
Resources, educational opportunities and forms, See: Finding Your Way: A Guide for Medical Decisions Near the End of Life in English, Spanish and Chinese.
www.sachealthdecisions.org/docs/TIO.pdf: Downloadable discussion manual (includes the quotes from this article as well as others).
http://www.respectingchoices.org: Excellent two-day course provided around the country and online to give you the skills and knowledge to be helpful to your patients and lead a change in end-of-life planning. See http://www.respectingchoices.org/history.asp for a history and description of the effectiveness of this course.
http://www.growthhouse.org/: website full of resources
www.epec.net: EPEC (Education for Physicians in End-of-life Care)
Not just for physicians, has trainings and resources
www.aacn.nche.edu/ELNEC: Nursing Education resources
www.lastacts.org: Archived resources on CPR, pain, children, music and much more
www.compassionandchoices.org: Legal forms for all states
POLST: Physicians Orders for Life Sustaining Treatment. Do an online search for the status of the POLST in your state.
http://www.funerals.org/about-the-fca: The Funeral Consumers Alliance (FCA) is a Federation of Nonprofit Consumer Information Societies protecting a consumer's right to choose a meaningful, dignified, affordable funeral since 1963
