What is the HIPAA Privacy Rule? A health law scholar explains

What is the HIPAA Privacy Rule? A health law scholar explains

The Health Insurance Portability and Accountability Act’s Privacy Rule is a federal law prohibiting health care providers, businesses and the people working with them – including administrative staff, laboratories, pharmacies, health insurers and so on – from disclosing your health information without your permission.

When people talk about HIPAA, they typically refer to the Privacy Rule provision established in 2003, which is just one part of a broader law initially passed by Congress in 1996. The Privacy Rule came into force after tennis star Arthur Ashe’s HIV status was publicly revealed and country music star Tammy Wynette’s health records were sold to tabloids. People were starting to worry about genetic privacy. And Congress recognized that the internet would make it easier for health care privacy breaches to occur.

Originally published in The Conversation - USE THIS LOGO

Why the HIPAA Privacy Rule matters

The HIPAA Privacy Rule gives you the right to control your health information disclosures so you can tell your health care provider what to share. If you don’t want to share some of your health information with your family members, you can tell your health care provider to withhold that information from them.

However, HIPAA only protects health care information held by specific kinds of health care providers. For example, health care data on your Apple Watch or Fitbit is not usually covered by HIPAA. Genetic data you enter on websites like Ancestry.com is also not covered by HIPAA. Other laws or agreements like the privacy disclosures required on many apps may protect that information, but HIPAA does not.

Sometimes people try to use HIPAA as an excuse for actions it doesn’t actually cover. For instance, some people who refused to comply with coronavirus-related mask rules in stores asserted that they couldn’t be asked to explain why because of HIPAA protections. But that’s not how this privacy law works: It’s legal for someone to ask you about your vaccination status. And anyone can provide information about their own vaccination status (or any personal health information) without violating HIPAA.

Are there exceptions to the HIPAA Privacy Rule?

Certain exceptions to HIPAA’s nondisclosure requirements allow covered health care providers to disclose patient information to help treat another person, protect public health and aid in certain law enforcement investigations.

During a pandemic, for instance, public health departments can provide information about how many people have tested positive for a disease, but they cannot mention specific names to the general public unless it’s necessary to alert particular people that they may have been exposed. This is because HIPAA and other privacy laws require them not to release any more information than is needed to keep people safe.

5 Strategies to Increase Hospital Patients’ Comfort

5 Strategies to Increase Hospital Patients’ Comfort

There are a lot more places that people would rather be on any day than in a hospital. Except for employees, most people are at hospitals because they are ill or visiting someone who is sick. That alone can result in feelings of hopelessness there isn’t much the average person can do. Hospitals are scary; the care seems cold and non-personalized, and communication is normally terrible. Discover how hospitals can use strategies to make patients feel more comfortable despite them being hospitalized to recover from illness or surgeries. 

Despite so many people being fearful of them, hospitals do a lot of good work in the communities they serve. Through education and preventative opportunities, many live daily lives without the need for prolonged stays in hospitals. However, for those who have illnesses that force them to go to hospitals, strategies that they can use to make patients more comfortable are: 

1. Professionally touch patients

Although touch can be misperceived, it is one of the best ways to build trust, compassion, care, and comfort between patients and doctors. Touch is vital in the treatment and done correctly, a skillful doctor can make their patient feel comfortable enough to welcome it. Touch also leaves patients feeling more human. Before their procedure is the best time to touch patients when they can see the doctor in clothes instead of scrubs and the surgical LED headlight intact. Touch also: 

  • Offers the patient a sense of encouragement. 
  • Builds a more personal relationship between the doctor and the patient. 
  • Leaves the patient feeling reassured. 
  • Gives the patient a sense of genuine support and care. 

2. Increase inpatient activity

Many patients in hospitals are not bedridden, incapacitated, or disabled. Many are there overnight for observation or tests. Instead of being confined to bed during that time, having an activity room and designing activities based on age groups will give patients something to do besides lying in bed. Some activities can include cards, puzzles, or charades. They can also include music, dancing, and arts and craft activities. Being busy helps keep patients’ minds off of their tests and helps make time go faster. 

3. Minimize bureaucracy

The stress of dealing with hospitalizations need not get compounded by bureaucracy. There are multiple ways to avoid endless stacks of paper when you are in the middle of being admitted into the hospital. Some things that hospitals can do to make patients more comfortable and avoid the unnecessary bureaucracy when checking in are: 

  • Make sure paperwork is complete in advance. 
  • Give patients a pre-op checklist. 
  • Has the patient’s ID bracelet been printed in advance? 

4. Provide access for overnight guests

One of the scariest things about staying in a hospital is being away from your loved ones. Although hospitals are not equipped to facilitate entire families, having a husband or wife to sleep next to their spouse comfortably is essential to making patients feel more at ease. When they can’t be with their spouse, many cannot rest and go into surgery or test sleep deprivation. In addition, to support, a spouse is there to assure their spouse, get information about the procedure from the doctors and nurses, and ask questions that the patient may not have thought to ask. 

5. Make the hospital room homier

Last but certainly not least, hospitals can make patients feel more comfortable by making everything about the patient’s stay and care feel more like home. Although a hospital is a rigorous and professional atmosphere, a hospital room with a window with curtains, a spare bed for a spouse with a blanket, a side table, and television are the beginnings of making a patient feel more at home. In addition, hospitals can also: 

  • Dim the lights. 
  • Adjust the temperature to the patient’s liking. 
  • Add essential oils to a diffuser. 
  • Allow patients to bring a picture from home. 
  • Allow patients to wear gowns from home. 
  • Have music playing. 
  • Offer more food options. 

Although most times patients are in the hospital to recover, there are strategies that hospitals can use to make patients feel more comfortable. Five of the top strategies are above, and if incorporated by the hospital, patients will feel a lot less anxiety about having to stay.  

Teen Volunteers Get a Foot in the Door for Nursing Home Careers

Teen Volunteers Get a Foot in the Door for Nursing Home Careers

Jasmine De Moya, 17, has dreamed for years of working in the medical field, and she yearned to spend time with older people, missing her grandparents, who live in the Dominican Republic. A program sponsored by the New Jewish Home health system in New York City that combines volunteering and free training for entry-level health jobs, career coaching and assistance on her college prep is helping make her hopes come alive.

Over the past three years, Jasmine has learned a lot about caring for older people, from the importance of speaking slowly and being gentle with frail residents who may have hearing or comprehension problems to how to brush their teeth or bathe them.

Originally published in Kaiser Health News.

“We practiced first with mannequins, so when we actually [worked on residents] I was in shock,” she said. “Cleaning a body and their private areas, I never expected I would do that. But then I got used to it.”

Last summer, Jasmine completed a certified nursing assistant training course. She has also researched and applied for colleges and student loans with help from an organization that the geriatrics career development program provides to volunteers like her. After graduating from high school last month, Jasmine will start nursing school at Lehman College in the Bronx in the fall. She’ll be the first in her family to attend college.

Since it launched in 2006, the geriatrics career development program has helped more than 700 high school students from 10 underserved schools in New York City get hands-on experience with geriatric care at the New Jewish Home in Manhattan and the Harry and Jeanette Weinberg Gardens senior living facility in the Bronx. Ninety-nine percent of program participants graduate from high school, and more than 150 have gone on to college.

The advantages of the program are also evident for the New Jewish Home, which operates two nursing homes, senior housing and assisted living facilities and a home care business in the New York City area. By familiarizing young people with geriatric care careers, the system aims to address its growing need for workers as the tide of baby boomers enter their later years.

Six of the top 10 fastest-growing jobs in the decade leading up to 2029 are projected to be in health care, according to the federal Bureau of Labor Statistics, including home health and personal care aides.

“One of our biggest challenges is that there aren’t enough people who want to work in this industry,” said Dr. Jeffrey Farber, president and CEO of the New Jewish Home system. “People don’t want to work with older adults.”

The New Jewish Home began its career development program for teens 15 years ago with the idea of training and hiring them as nursing assistants, Farber said.

But it has become more than that. Working a few afternoons a week for three years with older adults, students gain insights into aging and develop relationships with residents, some of whom are assigned as mentors. It also gives students assistance with figuring out career goals and putting the pieces in place to get there.

“I think the students would be successful without us, but we provide the structure and resources to help them succeed,” said John Cruz, senior director of workforce initiatives at the New Jewish Home, who oversees the program.

Students generally must devote two afternoons after school every week and several weeks during the summer, said Cruz. The program curriculum, developed with Columbia University Teachers College, initially teaches students basics about patient privacy, Medicare/Medicaid and overcoming stereotypes about older people. By the time they’re seniors in high school, students can train as certified nursing assistants and work as paid interns supporting the residents on the days they spend at the facility.

As part of the program, students may also become certified in other jobs, including patient care technician, phlebotomist, EKG technician, and medical coding and billing staff.

The pandemic, however, changed things. The New Jewish Home in Manhattan was hit hard, with dozens of covid deaths at the 514-bed facility.

Since volunteers weren’t permitted inside the facility, the home instead hired many of them as part-time employees so they could continue to help seniors. This also gave students a chance to complete the clinical training portion of their certified nursing assistant coursework.

In addition to the program for high school students, the health system created a program in 2014 for people ages 18 to 24 who are unemployed and out of school, training them to become certified home health aides and nursing assistants. Nearly 200 have completed the program and the New Jewish Home has hired three-quarters of them, at a starting wage of $15 to $19 an hour.

Both programs are supported primarily by grants from foundations.

In February, the state announced that nursing homes could accept visitors again, following federal guidelines. But many nursing home residents still rely on virtual visits, and during the spring Jasmine spent her time helping them connect with their families and other loved ones by iPad or phone.

The isolation was hard on the residents, and students provided sorely missed company. Asked how the students helped her, resident Dominga Marquez, 78, said, “Just talk.”

“We are lonely,” said Marquez. “I have a lot of friends that used to come every week to visit but, with the pandemic, nobody came.”

Kennedy Johnson, 17, said helping seniors experience virtual visits with their families during the pandemic made him realize how much he takes for granted.

“With the pandemic and doing the virtual calls, seeing how these families don’t get to interact with their loved ones every day, that really opened my eyes,” he said.

Working at the New Jewish Home was the first time Kennedy had ever been in a nursing home or seen the kinds of work that staff members do.

In the fall, he will start at Morehouse College in Atlanta and plans to major in political science. His goal: “I want to be a health care attorney so I can represent people … like this.”

Published courtesy of KHN (Kaiser Health News) a national newsroom that produces in-depth journalism about health issues. Together with Policy Analysis and Polling, KHN is one of the three major operating programs at KFF (Kaiser Family Foundation). KFF is an endowed nonprofit organization providing information on health issues to the nation.

Editorial: Nurses, Please, Please Roll Up Your Sleeves

Editorial: Nurses, Please, Please Roll Up Your Sleeves

The miasma of mistrust and paranoia around Covid vaccinations and other vaccines is profoundly ironic in a nation that places more trust in nurses and doctors than just about any other profession.  

For weary nurses and other health workers caring for victims of the latest surges, this year’s unnecessary loss of life is heartbreaking. And the latest death tolls can in large part be charged to the accounts of unprincipled politicians, who—instead of using their influence to guide the public responsibly—have severed all contact with reality. Tennessee even fired their top vaccine official (a highly respected pediatrician) for sharing 100% accurate, legal information regarding parental permission laws.  

Some of the mistrust is understandable, given Americans’ suspicion of authorities and resentful sense that the people In Charge are trying to modify our behaviors through public health laws, rules, and mutable “guidelines.” No matter that rules and guidelines help humans to survive together and perhaps even flourish, or that communities and polities have depended on public health measures for millennia to protect populations from disease and death.  

Nurses and other HCWs know better (or should know better)

However, we expect health care workers to be more mindful than the general public. APRNs, RNs, CNAs, and orderlies know all too well how high the stakes are, and during every shift, they see the consequences of ignoring basic health guidelines.

The Wild One | film by Benedek [1953] | Britannica
Marlon Brando in The Wild One. His iconic headgear set a dangerous trend.

HCWs did not need a pandemic to remind them that people die all the time because they refuse to follow simple, obvious medical advice based on empirical evidence. Cigarette smokers persistently ignore the facts and die slowly from cancer or suddenly from heart attacks. Motorcyclists die young when they leave their helmets behind to cultivate a Wild One rebel-biker mode.

Seniors succumb to annual flu viruses because the vaccine once made them ill for a day. Or, more recently, 30-something men and women never make it to 40 because surgical masks are uncomfortable and alienating . . . Or because a photogenic politician told them that Covid vaccinations are really a ploy to implant nanochips that will give shadowy Elites control over every man, woman, and child in the country. 

Naturally, in a nation that celebrates maverick behavior and hates to be bossed around, we can expect to find plenty of contrarians even among our 22 million health care workers (enough people to populate Sweden twice over). But it is deeply distressing that 100 nurses tried to sue Houston Methodist Hospital for firing them over noncompliance with its mandatory Covid vaccination policy. A story in Becker’s even referred to the case as “the nurses’ lawsuit.” 

Why even an “anti-vax” nurse has an obligation to get vaccinated

Now, like every American, nurses have the right to believe whatever they like. However, as a vital part of the healthcare system, you have a professional obligation to take all necessary precautions to protect the health of your patients. If you have cavils with medical science, you are probably in the wrong profession (Christian Science nursing might be a better fit). 

What about nurses and other HCWs who cannot be vaccinated for medical reasons? Hospitals with mandatory vaccination policies for other highly contagious diseases such as flu or Hepatitis B have been able to accommodate such nurses in the past by requiring them to wear masks; some even offered a choice: get your shots or you can wear a mask.

Over the past year, scientists all over the globe have been intently studying the prophylactic benefits of surgical masks as well as the well-beloved N95, but we have long known that wearing masks significantly reduces the risk of infecting others. So, hopefully, hospitals will allow masking as an alternative when they deploy vaccination mandates. Seeing immunocompromised nurses wearing surgical masks could also help patients and their families to understand that masks are not part of an insidious plot, but in fact really do protect them from infection. 

Again: you have the right to believe anything about mRNA vaccines, childhood shots and autism, abortion, evolution—anything—and should not be ridiculed or castigated for sincerely held beliefs.  However, as a nurse, when you put on your scrubs it is your professional duty to doff any personal, non-evidence-based beliefs that contradict your scientific training. If you are in a caring profession, respect your training enough to roll up that sleeve or mask up! 

Thanks to 21st-century science—and to the nurses who worked overtime to administer Covid vaccines—an additional 279,000 people in the US would be filling morgue trucks around the US. You cannot destroy ignorance entirely, but by taking a stand against it, you can save lives. 

Nurse Scientist Aims to Improve Practice Guidelines—and Health Outcomes—for Invasive Coronary Procedure

Nurse Scientist Aims to Improve Practice Guidelines—and Health Outcomes—for Invasive Coronary Procedure

When patients present with a specific type of heart attack (non-ST elevation acute coronary syndrome) or chest pain related to coronary heart disease (unstable angina), they often undergo several tests—many being invasive—and then they may be sent to other facilities for even more procedures. 

It’s time-consuming, it can be confusing to the patient, it can be stressful on the patient’s body, and when combined, can lead them to abandon care.

Sarah Slone, DNP, MSN, FNP-BC, CCRN began to address this problem from an implementation science standpoint in her Doctor of Nursing Practice (DNP) project.  She aimed to streamline the process of existing care options from acute symptom presentation in the hospital to discharge. 

But ultimately that raised a new question:

Can we determine best practices for when patients need catheterization (an invasive procedure) so that we can establish a standardized approach and identify barriers to care that may exist?

“Any invasive procedure carries risk,” Sarah says. “There are non-invasive options like stress tests, information that can be gleaned from a patient’s presentation and previous lab work, and newer options with CT scanners.”

Now she’s pursuing the question from a discovery science standpoint. Her Ph.D. research examines “care pathways” from acute symptom presentation to various methods of invasive and non-invasive testing, to establish best practices for when patients are most in need of these procedures.

From Implementation to Discovery

Sarah Slone graduated from the DNP Executive Track in May 2019, then started the Ph.D. in August 2020. She is in a new Johns Hopkins School of Nursing program that offers an alternative pathway to Ph.D. for nurses who have earned a DNP.  Students can transfer credits and earn their Ph.D. in about three years compared to about five years.

The DNP Executive Track is online with on-site immersions, but Ph.D. students must live in Baltimore. So Sarah moved from South Carolina to Baltimore, alone, at the height of the COVID-19 pandemic.

DNP to Ph.D. at the Johns Hopkins School of Nursing

She considered delaying her start but didn’t want to let the time go to waste. And even before the move, the family living situation was complicated.

“My husband is an interventional cardiologist who works in a hospital.  At the beginning of the pandemic, we had to decide if we wanted to live together since he would be at risk of being exposed. Our son is in college, but he returned home because of COVID. He decided that he wanted to remain in the house as well,” Slone says.  

Now in her second semester, Sarah reflects that the Ph.D. is not harder, but different than the DNP.

“The DNP enriched my perspective as a nurse scientist, but I learned that questions arise from evidence-based practice, and I needed a Ph.D. to explore that further.”

SARAH SLONE, DNP, MSN, FNP-BC, CCRN

“I’ve already grown a lot in terms of research,” she continues. “I came in with a specific idea of what I wanted to do and was able to develop my research project with my mentors into something not just fundable, but something that can grow into a wider program of research.” Sarah’s DNP mentor was Dr. Deborah Baker, Senior Vice President for Nursing of Johns Hopkins Health System and her Ph.D. mentors are Dr. Cheryl Dennison Himmelfarb and Dr. Kelly Gleason.

Sarah recommends that, if you are considering a Ph.D. and have a DNP, define your research questions early. “The sooner you can do it, the better you can align assignments, so they build and benefit you throughout the program.”

A Passion for Research

Sarah always had a passion for research—from working as a research assistant in a plant pathology lab in high school to initially studying biochemistry in college. She took some time off from undergrad to have a family and later decided to pursue a BSN. Upon graduation, she worked as an ICU nurse for five years, then became a family nurse practitioner, followed by work in general and trauma surgery. She discovered a passion for cardiovascular care when the 36-hour shifts in trauma surgery became too much (especially with a young family!) and the cardiovascular service was hiring.

“It’s fascinating,” Sarah says. “Cardiovascular disease remains the number one cause of morbidity and mortality in the United States.  There’s so much opportunity to improve the lives of patients.”

Read more:

Living Organ Donation: A Guide for Nurses and Patients

Living Organ Donation: A Guide for Nurses and Patients

Living organ donors are a valuable and essential resource for patients in need of kidneys, livers, and other lifesaving organs and tissues.

Medstar Georgetown University Hospital transplant nurse Allie Hayes has seen the benefits of living donation firsthand: The organs start functioning quickly, patients’ life expectancies increase, and a donor does not have to be deceased in order to save a life.

“Now you have two people with working kidneys and great urine output and no dialysis, and no one had to die in order for that to happen,” Hayes, a Family Nurse Practitioner and Georgetown University alumna, said. “It really is the best of both worlds.”

Although organ donation does not significantly affect most donors’ lifestyles in the long term, prospective donors should still consider how donating will affect them physically, psychologically, spiritually, and financially.

Living Organ Transplants: Needs, Benefits, and Risks

In June 2020, the U.S. Department of Health and Human Services released new guidelines for organ transplants aimed at improving access to organs and reducing the waitlist for organ transplant candidates.

Glossary of Living Organ Transplant terms

There are several types of living donation.

Blood type incompatible donation: A transplant in which the recipient receives specialized treatment to reduce the risk of organ rejection from a donor whose blood type is not compatible.

Directed donation: Organ donation in which the donor chooses the recipient.

Non-directed donation: Organ donation in which a donor gives an organ to an individual they do not know.

Related donation: Organ donation between parents, children, siblings, or other blood relatives.

Non-related donation: Organ donation between individuals who are not blood relatives, such as spouses or friends.

Kidney paired donation (KPD): Two or more kidney donor/recipient pairs who are willing to participate in a transplant, but whose blood types are incompatible. Recipients are able to swap donors for kidneys that are compatible with their blood types.

Positive crossmatch: Typically a last resort, this type of donation occurs between a donor and a recipient whose antibodies will cause rejection of the organ. Specialized treatment is required to prevent rejection.

Which Living Organs and Tissues Can Be Donated?

Organs

  • Kidney (most common)
  • Lobe of liver
  • Part of intestines
  • Part of pancreas
  • Partial lung
  • Uterus

Tissues

  • Amnion
  • Blood (including from umbilical cord)
  • Bone
  • Bone marrow
  • Skin

Who Can Become a Living Organ Donor?

In order to become a living donor, candidates should:

  • Be at least 18 years old
  • Be in good physical and mental health
  • Have normal organ function for the organ they wish to donate
  • Be willing to donate
  • Be well informed
  • Have a strong support system

Conditions that prevent people from donating include:

  • Acute infections
  • Cancer
  • Diabetes
  • High blood pressure
  • HIV
  • Hepatitis
  • Serious mental health conditions

What Are the Benefits of Living Donation?

There is a greater chance that an organ from a living donor will begin working more quickly than one from a deceased donor, and there is also a greater likelihood that the organ will work to its full capacity, Hayes said.

Living donation can also increase life span and quality of life for transplant recipients before going on dialysis.

“Many are not aware of the immense benefits of living donation prior to dialysis,” Hayes said. Dialysis puts patients at greater risk for cardiovascular events, blood infections and other long-term complications that can be mitigated with a transplant.

“We, as a team, are actively engaging in outreach and education to increase knowledge about living donation prior to dialysis so that donors and recipients can make informed decisions regarding an option likely to result in the best possible outcomes for both individuals.”

Although undergoing transplant surgery carries risk, living organ donors typically see few changes after the procedures, Hayes said.

What Are the Risks of Donating an Organ?

As with any major surgery, donating an organ carries some short- and long-term risks.

Short-term risks  may include:

  • Allergic reaction to anesthesia
  • Blood clots
  • Blood loss
  • Collapsed lung
  • Death (in major surgery)
  • Hernia
  • Infection, including urinary tract infections
  • Pain
  • Pneumonia
  • Psychological complications
  • Side effects of medication

Long-term risks may include:

  • Difficulty getting or keeping disability/life insurance
  • High blood pressure
  • Intestinal obstruction
  • Nerve damage
  • Pain
  • Pregnancy complications
  • Proteinuria (increased protein levels in urine)
  • Reduced kidney function or kidney failure

Considerations for Living Donors

Donors should ensure they have a strong support system in place prior to donating an organ, and making the decision to donate should include conversations with their friends and family, as well as the surgical team and social workers at a transplant center. A donor can opt out of completing a transplant at any point before the procedure.

Once a donor is approved for a transplant, the surgery will be scheduled in advance. Helpful preparations for donors can include compiling a contacts list for communication after the procedure, writing down questions for the transplant team, and having a caregiver or loved one attend pre-op appointments. Donors should make arrangements to take time off work, find childcare if needed, and organize post-operative care and assistance at home. Depending on the recipient and transplant center’s location, donors may have to travel for the surgery, so they should make travel arrangements ahead of time.

Prospective donors should also weigh:

Physical Considerations

Before surgery, potential donors must undergo a series of tests and appointments to reveal whether they are a good match for their transplant candidate. In addition to physical examinations and testing, evaluations for kidney donation include financial consultations and psychological evaluations.

“To make sure that organ donation will not negatively affect the life of the donor is super important,” Hayes said. “So, they go through a pretty rigorous process just to make sure that it is a safe and desirable outcome for everybody involved.”

Donors typically spend several days recovering in the hospital after surgery while the surgical team monitors them for any unexplained pain, infection around the incision, and other complications.


“They go through a pretty rigorous process
just to make sure that it is a safe and desirable outcome for everybody involved.”

—Allie Hayes, Family Nurse Practitioner

“Some patients experience more pain than others, but that really varies patient to patient,” Hayes said. “We are pretty good at managing that right from the start.”

Hayes encourages donors to move as soon as possible after surgery.

“We want people getting up and out of bed either the day of surgery or the following day,” she said. “Early ambulation is one of the biggest measures that people can do to both start regaining their strength and preventing complications, like blood clots. It helps people start gaining their stamina back again. It helps regain muscle. It helps the lungs inflate more to prevent pneumonia.”

Donors can consult with their surgical team to discuss appropriate exercises for regaining mobility and strength following surgery. They will have to return for follow-up appointments shortly after being discharged, as well as annual tests, blood pressure checks, and blood tests.

Beyond the weeks or months it takes to recover from surgery, most donors do not have to make significant lifestyle changes after donating an organ.

Psychological Considerations

Most donors experience some degree of uncertainty during the evaluation process, according to Hayes.

“Oftentimes, this is because donors worry about what will happen if their only remaining organ fails, putting them in the position of the recipient, waiting for someone to come to their rescue,” she said. “This is why the donor evaluation is so thorough.”

It is also normal for donors to experience mixed emotions after donating an organ. The psychological side effects of organ donation can include anxiety and depression. Family conflict and concerns about finances and health can also create tension that is sometimes overlooked, Hayes said.

“You consider it more of a physical procedure and less of a psychological procedure, but there is always going to be that psychological aspect to it,” Hayes said. “Some patients then get a little bit nervous.”

In the early days of recovery, it can also be difficult for young and healthy donors to adjust to the vulnerability required to depend on a caregiver.

“These are people who are not used to being incapacitated in any way,” Hayes said. “They are the healthy one. So going from being that healthy person, helping someone else, to being the one who needs a little bit of help, even that can take a toll psychologically.”

After the procedure, donors and recipients have phone access to a transplant team member.

“We are always available to answer questions and address concerns, even after the surgery is complete,” Hayes said.

Tips for Addressing the Psychological Effects of Organ Donation

Establish a strong support system.

Having family and friends who can drive donors to follow-up appointments, help with tasks such as cooking and cleaning, and provide encouragement will be helpful as donors are recovering.

Have confidence in the decision to donate.

Donors can build confidence ahead of the procedure by talking to their surgical team, who will not try to pressure them into undergoing surgery.

Write down thoughts about the motivation to donate before surgery.

Having this reference in writing can help remind patients why they chose to donate if they are questioning their decision after the procedure.

Consider the relationship with the recipient.

For non-directed donations, both the donor and recipient must want to contact each other for transplant coordinators to connect them. Donors should consider expressing their desires to contact their recipient if they think it would help in their recovery.

Join a support group for organ donors.

A transplant center may be able to provide referrals to other living donors who have undergone similar experiences.

Tips for Caregivers

In the days and weeks following transplant surgery, an organ donor’s designated caregiver can aid in the donor’s recovery. Caregivers can help support a donor in a variety of ways:

  • Gather instructions from the surgical team.
  • Keep visitors to a minimum after surgery.
  • Make sure the donor is eating and drinking regularly.
  • Help with tasks like driving, cooking, and cleaning.
  • Remind the donor that recovery takes time.

Other Considerations

Spiritual considerations

Religion and culture can influence attitudes toward organ transplants But many major religious groups support organ donation as a charitable act or see it as a personal choice. Talking to faith leaders can help individuals process whether organ donation is the best decision for them.

Financial considerations

Donors should anticipate how a transplant will affect time they need to take off work and how they will pay for the costs associated with transplants, such as:

Financial Assistance/Guidance for Living Organ Donors:

Additional Resources

These links offer additional information about the living transplant process.

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