Being a Healthcare Advocate for a Friend in Hospital
Introduction
We – as patients, as caregivers, and as advocates – are in dire need of knowledge, understanding, support and sense of agency when making our journey into healthcare. This document is intended to provide information about healthcare advocacy and the role of a family/friend advocate. It is an overview for those who want a better understanding of how to help a friend or family member in a hospital setting, and how to help plan for care after discharge.
What is the role of a healthcare advocate?
The advocate is intended to help the patient and patient’s family achieve a degree of empowerment, better health outcomes, and reduce stress during the difficult medical journey. Our aim is to provide some strategies to help when assisting a family member or friend navigate the health care system.
We will not be focusing on professional healthcare advocates, the healthcare managers who are employed to provide this service. They are professionals usually with a social work or nursing background, trained at the master’s level.
Instead, we will focus on a family/friend patient advocate whose role it is to assist patients in communicating with healthcare providers by both providing and receiving crucial information needed by patients in making decisions about their health care. The clarity of the advocate’s role and function in the healthcare constellation is important since he/she is not in a decision maker, but a person with some capacity to interpret for the patient some of the information being presented and to advocate for their wishes.
Who should you choose as your advocate?
The advocate can be anyone of the patient’s choosing. When selecting an advocate, it is suggested that you choose someone who knows you well and is a calming presence, organized, assertive and comfortable in asking questions. Of particular importance, is that the person selected is someone you trust and who is very well informed about your medical condition/s. A person who can paint a picture of who you are as a well person, since the health care team may perceive you exclusively as a “sick” helpless elder.
How to begin?
You may start by having your selected friend health advocate accompany you to your annual physician visits helping you understand and feel supported by someone in addition to healthcare provider’s. However, the time your need for an advocate is greatest is at the time of an Emergency Room visit and hospitalization.
Advocating for a friend in a hospital setting
Early in the Emergency Room and on the inpatient service you will need to communicate in writing, whether you are asked to or not, that you have given permission for your medical information to be shared with your advocate, and that you are requesting that it be written in your chart. If you are the person’s health care proxy as well, make sure that is also noted.
After admission to the hospital
On admission to the hospital, the patient needs to say, “I want it on my chart that ______________ can speak with the doctors on my behalf.”
(Your name)
The patient’s health care proxy or next of kin can give permission if the patient is unable to.
How to speak to anyone on the medical team
The advocate needs to really know the person – their medical history, their medications, their current medical problems, their wishes, and the living situation. Anything you can learn ahead of time will be very useful. If the person has a health care proxy, you need to know that and convey the situation to that person.
Posted in the hospital room are the names of the nursing assistant and the nurse assigned to the patient. From the nurse you can learn what tests are scheduled and when the patient may expect results. Armed with this information you and the patient will know when the doctor will interpret the results and the implications.
Be assertive, but do not be aggressive or confrontational. It will get you nowhere.
Convey who the person really is. Emphasize the person’s strengths. Paint the picture of the person, their level of independence, their interests, and any key points that may be helpful.
When you talk to the medical staff, you might say, “This is what (the patient) understands. This is what she forgot to ask this morning.” Be persistent, but patient and kind.
Be aware that while in the hospital, the hospital doctor (the Hospitalist), not the patient’s primary MD, will be overseeing the medical care, so that person is an important resource.
Once on an inpatient service, the stressors associated with hospitalization are multiple. There are the pressures for the patient to provide information to a host of different health providers, doctors, nurses, pharmacists, discharge planners, and other hospital representatives. The advocate remains central in securing and communicating this needed information as well as making sure the patient is included in all these communications.
Specific tasks of the healthcare advocate
Some of the more specific tasks the healthcare advocate may do on behalf of friend or family member at this point in the hospital experience includes clarifying and understanding all of the information being given; making sure the person understands tests and procedures being discussed, asking about the patient’s comfort with treatment plan; assisting the patient in a discussion of options; helping in the co-ordination of the discharge plan.
Connect with the hospital’s Discharge Planner ASAP
It is never too early to make a connection with the Discharge Planner. Planning for discharge starts the first day the patient is in hospital. It is the job of the Discharge Planner to establish what the patient’s needs will be after leaving the hospital, so the more the advocate knows and can communicate about the home situation, the better they can assist the patient.
The Discharge Planner will be learning about your patient’s situation in the hospital, so having a positive working relationship will be important. The Discharge Planner serves as both nurse and social worker, and works with the family to establish what the patient will need after leaving the hospital. See the next section for information about what comes after hospitalization.
What needs to be decided before discharge
At discharge it is important to identify how much help the patient will need and who is available to provide help. If the patient has been referred for home care, that means a visiting nurse will visit within 2-3 days and a Home Health Aide may be scheduled to assist with activities like bathing, dressing and meal preparation. The time that a Home Health Aide is in the home is very limited, usually under 2 hours, 2-3 days per week.
If more help is needed and there is no family member or other person available, the hospital provides a list of caregivers and agencies. There is also a list of these agencies compiled by CAN member, Mary Loughran. CAN members will find that in their accounts on the Table of Contents once they log into the private pages of the CAN website.
Tasks at the time of discharge
There are many tasks at time of discharge that the family/friend advocate can assist with, like getting the prescribed medications from the pharmacy, making sure medical equipment is ordered and delivered, making follow up appointments and arranging transportation for these appointments. Many of these tasks can be delegated to friends or neighbors.
NOTE: If there is no family member in the household, a housekeeper who knows the patient and knows the house can be a real asset.
Finding nursing care and home health aides
The hospital will give you a list of people who can be hired privately. If you hire privately for a couple of weeks or less, you won’t have to pay Social Security, but if it is long-term, you will have to.
If you go through an agency, they will take care of Social Security and you may pay about $25 an hour. This is an estimate only. The agency takes money off the top.
If hiring privately, you might pay about $20 an hour. Home Instead is a very good private agency, but taking care of Social Security falls to the people hiring,
An example of a friend healthcare advocate
The role of a friend healthcare advocate is best illustrated through the following example:
Sam is in a NYC hospital for knee replacement. The surgery goes well. The surgeon visits post-surgery. All that Sam remembers is that he can go home the next day following physical therapy. When his good friend, Ed, visits that evening he asks Sam about pain medicine and about getting help at home. Does his doctor know he lives alone? Ed realizes that Sam, intent on getting home, has not made the necessary arrangements for good safe discharge so with Sam’s permission, he becomes Sam’s advocate.
He meets with the discharge planner and requests some home care assistance; he arranges to be with Sam during physical therapy and clarifies the exercises permitted and the restrictions. He speaks with the surgeon and makes sure that Sam has transport for his follow up appointments. He gets Sam medication and arranges to be present at time of discharge. With Sam’s permission he contacted Sam’s nephew to ask if he could be with Sam overnight for the next couple of nights. And thanks to Ed’s intervention the hospital does order home care follow up, so the Visiting Nurse visited and arranged for a home health aide twice weekly for 2 weeks.
Conclusion
The major goal of health care advocacy is supporting the patient in advocating for themselves. When you are acting as an advocate, your primary commitment is to the person you are advocating for. When advocating for someone you are giving the gift of your time and commitment to their well-being. The person you are advocating for is giving you their trust at a time of great vulnerability.
The authors:
Marie Thorpe grew up in Ireland, and did nursing and midwifery training in England. Here in the U.S., she worked many different areas of health care: Intensive Care Units and Cardiac Care Units, and as Director of Residential Care for multiply handicapped young adults. Most recently she worked as a Hospice nurse and a Care Manager assisting patients and families. She has considerable experience as both a professional health care advocate and as a friend advocate.
Martha (Marti) Gabriel is a retired NYU Social Work professor whose interest in advocacy is fueled by her experiences teaching aspiring social work clinicians, by her clinical and administrative experiences as Director of Social Work at Jacobi Hospital, and by her clinical supervisory role at the Gay Men's Health Crisis.
We – as patients, as caregivers, and as advocates – are in dire need of knowledge, understanding, support and sense of agency when making our journey into healthcare. This document is intended to provide information about healthcare advocacy and the role of a family/friend advocate. It is an overview for those who want a better understanding of how to help a friend or family member in a hospital setting, and how to help plan for care after discharge.
What is the role of a healthcare advocate?
The advocate is intended to help the patient and patient’s family achieve a degree of empowerment, better health outcomes, and reduce stress during the difficult medical journey. Our aim is to provide some strategies to help when assisting a family member or friend navigate the health care system.
We will not be focusing on professional healthcare advocates, the healthcare managers who are employed to provide this service. They are professionals usually with a social work or nursing background, trained at the master’s level.
Instead, we will focus on a family/friend patient advocate whose role it is to assist patients in communicating with healthcare providers by both providing and receiving crucial information needed by patients in making decisions about their health care. The clarity of the advocate’s role and function in the healthcare constellation is important since he/she is not in a decision maker, but a person with some capacity to interpret for the patient some of the information being presented and to advocate for their wishes.
Who should you choose as your advocate?
The advocate can be anyone of the patient’s choosing. When selecting an advocate, it is suggested that you choose someone who knows you well and is a calming presence, organized, assertive and comfortable in asking questions. Of particular importance, is that the person selected is someone you trust and who is very well informed about your medical condition/s. A person who can paint a picture of who you are as a well person, since the health care team may perceive you exclusively as a “sick” helpless elder.
How to begin?
You may start by having your selected friend health advocate accompany you to your annual physician visits helping you understand and feel supported by someone in addition to healthcare provider’s. However, the time your need for an advocate is greatest is at the time of an Emergency Room visit and hospitalization.
Advocating for a friend in a hospital setting
Early in the Emergency Room and on the inpatient service you will need to communicate in writing, whether you are asked to or not, that you have given permission for your medical information to be shared with your advocate, and that you are requesting that it be written in your chart. If you are the person’s health care proxy as well, make sure that is also noted.
After admission to the hospital
On admission to the hospital, the patient needs to say, “I want it on my chart that ______________ can speak with the doctors on my behalf.”
(Your name)
The patient’s health care proxy or next of kin can give permission if the patient is unable to.
How to speak to anyone on the medical team
The advocate needs to really know the person – their medical history, their medications, their current medical problems, their wishes, and the living situation. Anything you can learn ahead of time will be very useful. If the person has a health care proxy, you need to know that and convey the situation to that person.
Posted in the hospital room are the names of the nursing assistant and the nurse assigned to the patient. From the nurse you can learn what tests are scheduled and when the patient may expect results. Armed with this information you and the patient will know when the doctor will interpret the results and the implications.
Be assertive, but do not be aggressive or confrontational. It will get you nowhere.
Convey who the person really is. Emphasize the person’s strengths. Paint the picture of the person, their level of independence, their interests, and any key points that may be helpful.
When you talk to the medical staff, you might say, “This is what (the patient) understands. This is what she forgot to ask this morning.” Be persistent, but patient and kind.
Be aware that while in the hospital, the hospital doctor (the Hospitalist), not the patient’s primary MD, will be overseeing the medical care, so that person is an important resource.
Once on an inpatient service, the stressors associated with hospitalization are multiple. There are the pressures for the patient to provide information to a host of different health providers, doctors, nurses, pharmacists, discharge planners, and other hospital representatives. The advocate remains central in securing and communicating this needed information as well as making sure the patient is included in all these communications.
Specific tasks of the healthcare advocate
Some of the more specific tasks the healthcare advocate may do on behalf of friend or family member at this point in the hospital experience includes clarifying and understanding all of the information being given; making sure the person understands tests and procedures being discussed, asking about the patient’s comfort with treatment plan; assisting the patient in a discussion of options; helping in the co-ordination of the discharge plan.
Connect with the hospital’s Discharge Planner ASAP
It is never too early to make a connection with the Discharge Planner. Planning for discharge starts the first day the patient is in hospital. It is the job of the Discharge Planner to establish what the patient’s needs will be after leaving the hospital, so the more the advocate knows and can communicate about the home situation, the better they can assist the patient.
The Discharge Planner will be learning about your patient’s situation in the hospital, so having a positive working relationship will be important. The Discharge Planner serves as both nurse and social worker, and works with the family to establish what the patient will need after leaving the hospital. See the next section for information about what comes after hospitalization.
What needs to be decided before discharge
At discharge it is important to identify how much help the patient will need and who is available to provide help. If the patient has been referred for home care, that means a visiting nurse will visit within 2-3 days and a Home Health Aide may be scheduled to assist with activities like bathing, dressing and meal preparation. The time that a Home Health Aide is in the home is very limited, usually under 2 hours, 2-3 days per week.
If more help is needed and there is no family member or other person available, the hospital provides a list of caregivers and agencies. There is also a list of these agencies compiled by CAN member, Mary Loughran. CAN members will find that in their accounts on the Table of Contents once they log into the private pages of the CAN website.
Tasks at the time of discharge
There are many tasks at time of discharge that the family/friend advocate can assist with, like getting the prescribed medications from the pharmacy, making sure medical equipment is ordered and delivered, making follow up appointments and arranging transportation for these appointments. Many of these tasks can be delegated to friends or neighbors.
NOTE: If there is no family member in the household, a housekeeper who knows the patient and knows the house can be a real asset.
- Getting the medications needed
- Knowing if the home is set up adequately for what the patient needs
- Setting follow-up appointments
- Be sure you have the phone numbers you will need
- Will the people who need to access the patient be able to get in and out of the house?
- Medical equipment – has it been ordered? Will someone be at the house to receive it?
Finding nursing care and home health aides
The hospital will give you a list of people who can be hired privately. If you hire privately for a couple of weeks or less, you won’t have to pay Social Security, but if it is long-term, you will have to.
If you go through an agency, they will take care of Social Security and you may pay about $25 an hour. This is an estimate only. The agency takes money off the top.
If hiring privately, you might pay about $20 an hour. Home Instead is a very good private agency, but taking care of Social Security falls to the people hiring,
An example of a friend healthcare advocate
The role of a friend healthcare advocate is best illustrated through the following example:
Sam is in a NYC hospital for knee replacement. The surgery goes well. The surgeon visits post-surgery. All that Sam remembers is that he can go home the next day following physical therapy. When his good friend, Ed, visits that evening he asks Sam about pain medicine and about getting help at home. Does his doctor know he lives alone? Ed realizes that Sam, intent on getting home, has not made the necessary arrangements for good safe discharge so with Sam’s permission, he becomes Sam’s advocate.
He meets with the discharge planner and requests some home care assistance; he arranges to be with Sam during physical therapy and clarifies the exercises permitted and the restrictions. He speaks with the surgeon and makes sure that Sam has transport for his follow up appointments. He gets Sam medication and arranges to be present at time of discharge. With Sam’s permission he contacted Sam’s nephew to ask if he could be with Sam overnight for the next couple of nights. And thanks to Ed’s intervention the hospital does order home care follow up, so the Visiting Nurse visited and arranged for a home health aide twice weekly for 2 weeks.
Conclusion
The major goal of health care advocacy is supporting the patient in advocating for themselves. When you are acting as an advocate, your primary commitment is to the person you are advocating for. When advocating for someone you are giving the gift of your time and commitment to their well-being. The person you are advocating for is giving you their trust at a time of great vulnerability.
The authors:
Marie Thorpe grew up in Ireland, and did nursing and midwifery training in England. Here in the U.S., she worked many different areas of health care: Intensive Care Units and Cardiac Care Units, and as Director of Residential Care for multiply handicapped young adults. Most recently she worked as a Hospice nurse and a Care Manager assisting patients and families. She has considerable experience as both a professional health care advocate and as a friend advocate.
Martha (Marti) Gabriel is a retired NYU Social Work professor whose interest in advocacy is fueled by her experiences teaching aspiring social work clinicians, by her clinical and administrative experiences as Director of Social Work at Jacobi Hospital, and by her clinical supervisory role at the Gay Men's Health Crisis.